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Speaker 1: You're listening to a Mother and Mere podcast.

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Speaker 2: I heard him call out, I like mom, like where

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Speaker 2: are you or something, and I'm like I'm right here, Darlan.

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Speaker 1: And then he was like, don't you leave me?

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Speaker 2: Sorry, And I was like, I'm not going to leave you, Like,

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Speaker 2: I'm you can't leave me. You could have promise me

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Speaker 2: don't leave me either, and I'm that was really the

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Speaker 2: last thing that he said to me.

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Speaker 3: Today on No Filter, we're talking about motherhood, fear, and

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Speaker 3: the unimaginable moment when a child becomes critically ill. My

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Speaker 3: guest is Michelle Burgess, whose nine year old son Leo,

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Speaker 3: became suddenly and dangerously unwell earlier last year while their

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Speaker 3: family was on a holiday. Within days, Leo lost the

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Speaker 3: ability to move his body. He was transferred between hospitals

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Speaker 3: in two states. He was eventually placed into an induced

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Speaker 3: coma while doctors worked to understand what was happening. Leo

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Speaker 3: was later diagnosed with an extremely rare autoimmune neurological condition

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Speaker 3: that affects the brain and spinal cord. What followed was

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Speaker 3: months in hospital, intensive treatment and the beginning of a

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Speaker 3: long recovery that is still unfolding. This conversation traces the

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Speaker 3: terrifying early days of Leo's illness, the uncertainty of intensive care,

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Speaker 3: and the absolute heart of a warrior that's required to

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Speaker 3: keep going when the future is unclear. This is Michelle Burgess, Hello,

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Speaker 3: welcome to No Filter. Should I be scared, Well, you

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Speaker 3: know what, there is nothing I can say or do

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Speaker 3: to you. I don't imagine that would scare you more

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Speaker 3: than the places that you have been with your youngest son, Leo.

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Speaker 3: Would that be right, Yeah, it would be because I

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Speaker 3: just have to give this some context for our listeners

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Speaker 3: that when it's some ill befalls you as an adult

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Speaker 3: in this world, you kind of it's hard, but you

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Speaker 3: can navigate it because it's you. But when an illness

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Speaker 3: or some kind of fatalistic ill befalls one of your children, yes.

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Speaker 4: That is.

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Speaker 3: One of the hardest crosses to bear. And I know

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Speaker 3: that many of our listeners will be in situations where

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Speaker 3: they have a.

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Speaker 4: Child of their own or a child that they love.

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Speaker 3: That has had some illness before them, yes, or some calamity,

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Speaker 3: And the hearts of listeners will be with you as

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Speaker 3: you take us on the journey that you've had with

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Speaker 3: your youngest son, Leo, and we thank you in advance,

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Speaker 3: and we acknowledge those who are listening, okay, because it's

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Speaker 3: hard and what you've done is very hard and unexpected.

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Speaker 3: Unexpected because of course, when you know, when you are

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Speaker 3: enjoying the world as much as you can, which I

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Speaker 3: believe that you were.

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Speaker 4: In December twenty twenty four.

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Speaker 2: Yes, yeah, we flew down to Tasmania on December twenty

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Speaker 2: twenty four on New Ye's Eve because Leo wanted to

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Speaker 2: have New Year's Eve at my sister's house on the

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Speaker 2: northwest coast.

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Speaker 1: So yeah, we flew down early in the morning.

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Speaker 3: And so Leo at this point is how old he's

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Speaker 3: ape right.

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Speaker 4: And he's your second. You've also got Charlie.

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Speaker 2: Yeah, so Charlie was fifteen at time, that's great, and

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Speaker 2: Charlie was he was now he was down in Tasmania

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Speaker 2: already because he was older, and Leo, with his neuro divergence,

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Speaker 2: was very still, very attached to me, so there was.

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Speaker 1: No way that he would go down there a lot,

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Speaker 1: of course.

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Speaker 2: So Charlie went down first and was with my family,

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Speaker 2: and then Leo and I went down on.

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Speaker 1: The thirty first, just because I had to work up

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Speaker 1: until that point.

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Speaker 4: So you go, you're looking forward to everything.

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Speaker 1: Yes, absolutely, yeah.

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Speaker 4: A glorious time, the new year.

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Speaker 3: You reunited with your sister, Yeah, your beautiful boys.

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Speaker 2: Yes, yeah, all my family live in Tasmania, so I

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Speaker 2: get to see you all, everyone all at once.

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Speaker 1: Yes, absolutely yes.

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Speaker 2: And then what happened, Well, everything was okay until he

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Speaker 2: became unwell on the fourth, like the evening of the fourth. However,

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Speaker 2: looking back, the first kind of signs I think that

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Speaker 2: were missed was the evening of the third of January.

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Speaker 2: So only a few days after we arrived, and my

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Speaker 2: sister and brother in law and I and Leo we

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Speaker 2: went out for dinner and we kind of how is

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Speaker 2: this going to go? Because he has ADHD and ASD.

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Speaker 4: So situations like that are challenging for him. Yes, just anyway,

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Speaker 4: but they can be navigated.

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Speaker 2: Yeah, he seemed excited to go, so we thought, let's

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Speaker 2: just try it.

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Speaker 1: And he was fine. He just was drinking excessively.

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Speaker 2: So you nor whenly go out to like country pubs

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Speaker 2: and you get the jugs of water on the table. Yeah,

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Speaker 2: two of those that night, Like we couldn't stop him drinking,

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Speaker 2: and I was like, he's I know, that's the health

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Speaker 2: risk in itself, Like that's I thought he was being silly,

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Speaker 2: but I don't think he was now, I think that

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Speaker 2: was something had already started happening to his body.

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Speaker 1: But didn't think anything of it. And then the evening of.

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Speaker 2: The fourth we like, we were staying at my sister's

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Speaker 2: house and he was just chilling out on their couch

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Speaker 2: watching YouTube and he's very still and quiet, and then

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Speaker 2: he said, Mom, you know, can you carry me to bed?

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Speaker 1: I don't feel well, which.

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Speaker 2: I hadn't had to do for a long time. So

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Speaker 2: I did, and I was like, well, you know, what's

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Speaker 2: the matter. And he's like, you know, my I've got

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Speaker 2: a headache. You know, my eyes hurt. You know, I

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Speaker 2: feel really.

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Speaker 1: Hot, and I had he doesn't sleep.

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Speaker 2: He hadn't been sleeping very much because the sun doesn't

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Speaker 2: set till about ten down in Tasmania.

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Speaker 4: On the summer time.

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Speaker 2: Yeah, and then he's up first thing to be with

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Speaker 2: my sister's dogs. And he's always struggled to explain how

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Speaker 2: he feels and where things hurt. So like, for an example,

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Speaker 2: once he had a sore throat and he was telling

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Speaker 2: me his neck really hurt, but it's a line of

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Speaker 2: questions to find out that it was his throat that hurt.

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Speaker 1: So when he said he had sore eyes, I was like, well, youah,

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Speaker 1: no wonder because you're tired and they probably saw, you know.

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Speaker 1: He slept all night and then woke up and we

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Speaker 1: went for a swim, so I was like, oh, that's

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Speaker 1: over and done with. But then when we came back,

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Speaker 1: he vomited and was burning up again. So I my sister,

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Speaker 1: having no kids, I was like, I need to go

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Speaker 1: and get some Panda and Europan and I got like

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Speaker 1: an influenza test and a COVID test and a thermometer,

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Speaker 1: and like every like they came. The test came back negative,

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Speaker 1: and then I did them again and they came back

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Speaker 1: negative again, and he seemed kind of average, nothing different

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Speaker 1: than like a virus type of thing. And the next

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Speaker 1: day we stayed at.

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Speaker 2: My parents' house about ten minutes away because it was

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Speaker 2: a bit darker and quieter there, and but he hopped

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Speaker 2: up and he was you know, watching his favorite TV shows, eating,

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Speaker 2: and he seemed okay, and then he kind of crashed again.

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Speaker 1: So it was weird. I was thinking, Oh, he's getting better,

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Speaker 1: and then no, he was rushed again.

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Speaker 2: So this went on for maybe two days, and you know,

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Speaker 2: after that day, then the next day he wanted to

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Speaker 2: go op shopping because he likes op shopping.

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Speaker 1: And then that night.

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Speaker 2: That's when I was like, something's not right, Like he

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Speaker 2: was really really distraught.

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Speaker 1: He he wouldn't drink for me anymore. He wouldn't let

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Speaker 1: me put the I can't even think what that stuff's called.

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Speaker 1: You know, when you dehydrated and you hydra light o

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Speaker 1: the hydra line. He wouldn't even let me put that.

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Speaker 1: And we were just in the dark the whole time.

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Speaker 2: And then at one point I looked with my phone

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Speaker 2: torch and I could see half of his body had

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Speaker 2: this rash on it, so quickly took a photo.

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Speaker 1: Then that disappeared, And in the morning, I called.

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Speaker 4: The rash disappeared? Did it?

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Speaker 1: Yeah?

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Speaker 2: The rash disappeared right down the right side of his body,

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Speaker 2: the entire right side of his body.

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Speaker 1: And yeah, I called the healthline in the morning just.

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Speaker 2: To see what they suggested, because I didn't want to

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Speaker 2: take him to the emergency room and have him have

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Speaker 2: to wait there if they were just home. And she said,

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Speaker 2: we need to either get an ambulance and I'm knowing

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Speaker 2: the situation there with the ambulance, it would have been

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Speaker 2: quicker for me to drive him.

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Speaker 1: And I was like, I want to have a bath first.

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Speaker 1: This is okain, Like, I was like, oh no, we can't.

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Speaker 2: We going to the hospital, and he hopped in the

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Speaker 2: car and by the time we got there, he couldn't walk,

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Speaker 2: and I had to get a wheelchair to bring him

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Speaker 2: in to the emergency room. And I'd called my sister

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Speaker 2: and she met me there and yeah, so he was

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Speaker 2: just kind of passed out on the bed by the

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Speaker 2: time we got there.

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Speaker 3: And everybody, when you say he couldn't walk, he was

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Speaker 3: too weak to walk at that point, in and out

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Speaker 3: of consciousness or.

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Speaker 2: Just so lethargic and weak, and yeah, he just didn't

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Speaker 2: have the strength to even.

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Speaker 1: Hop out of the car.

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Speaker 2: So I went and got a wheelchair and brought it out,

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Speaker 2: and once he was in, we didn't mate in the ear.

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Speaker 1: I think they'd known of his arrival.

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Speaker 2: They just rushed us out in the back and we're

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Speaker 2: taking bloods and fluids and he was.

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Speaker 1: So scared of needles.

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Speaker 2: Anyways, the fact that he just laid there spoke volumes

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Speaker 2: to me that he's something's this is odd I've got

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Speaker 2: you know, I've seen my kids sick before, but this

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Speaker 2: is something strangers happening here.

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Speaker 3: And also you know at the hospital when they act

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Speaker 3: with urgency.

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Speaker 1: Yeah, it's not good.

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Speaker 4: No, it's not good.

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Speaker 3: And it's funny, isn't it, Because normally you'd be appreciative

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Speaker 3: of it, but they vibrated a different sort of frequency.

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Speaker 2: Yeah, I mean, and they everyone there was amazing that

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Speaker 2: they had a They decided they needed to do a

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Speaker 2: lumber punction.

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Speaker 1: I'd never I didn't know what a lumber puncture was.

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Speaker 1: I had no.

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Speaker 2: Idea of where their thought process was going as to

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Speaker 2: what might be wrong with Leo, as to why they

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Speaker 2: might want to do the lumber puncture.

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Speaker 1: So they gave him ketamine.

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Speaker 2: So they gave him about a lot of ketamine to

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Speaker 2: try and keep him still. And there were like doctors

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Speaker 2: everywhere and nurses everywhere, and and Leo could still kind

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Speaker 2: of talk like he's a fighter.

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Speaker 1: He fought that ken of mean, he was not. He

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Speaker 1: wasn't going to catch it.

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Speaker 2: But they weren't successful with getting any fluid out of

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Speaker 2: his spine.

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Speaker 4: So what were they looking for at that point?

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Speaker 1: Do you know? I know now I didn't know at

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Speaker 1: the point at that time.

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Speaker 2: So at that time, what I've learned is if you

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Speaker 2: present to a hospital a hospital with like men in

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Speaker 2: Chicockle type symptoms, they.

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Speaker 4: All which was the rash and the yeah and the

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Speaker 4: eye pain.

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Speaker 1: They also they start to look for different autoimmune diseases.

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Speaker 2: But I had no I didn't that. I just didn't

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Speaker 2: even come into my mind. I just thought he had

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Speaker 2: a virus and even at this point and then he'll

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Speaker 2: get better, even with his eye pain. It wasn't until

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Speaker 2: were in the hospital and I said, you know, the

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Speaker 2: first day he was complaining about his eyes being sore,

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Speaker 2: but he hasn't mentioned it since. And he goes there,

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Speaker 2: Oh you know, they have been sorry. I wasn't just

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Speaker 2: just he wasn't saying anything.

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Speaker 3: So it was which of course is a very interesting

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Speaker 3: glimpse into the mind of a child, from the mind

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Speaker 3: of your boyo, because they also want to feel well, yes,

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Speaker 3: and they don't want to do anything that's going to

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Speaker 3: cause you alarm.

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Speaker 1: Yes, that's correct.

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Speaker 3: Yeah, And they don't want to do anything that might

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Speaker 3: result in them going to hospital and being possibly away

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Speaker 3: from you.

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Speaker 2: Oh. Yes, So that was never going to be an issue.

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Speaker 2: That would never have happened, that I would be away

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Speaker 2: from him. He doesn't know that. And even after they

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Speaker 2: weren't successful, like a few doctors tried to get the

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Speaker 2: spinal fluid and they weren't successful, and they were like,

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Speaker 2: you know, they said, we can't give him any more ketamene.

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Speaker 2: He's had like five or six rounds of it now,

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Speaker 2: and they were like, you know, he needs to just

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Speaker 2: rest on his bed. He was swinging himself out of

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Speaker 2: the bed, saying I'm leaving now, like I'm going, and.

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Speaker 1: You know, they're like, you need to lay out. He

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Speaker 1: won't be able to stand up.

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Speaker 2: So but yeah, he swung himself off, kind of had

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Speaker 2: to hold him up, just hold him there because he

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Speaker 2: wasn't staying on that bed. He was determined he didn't

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Speaker 2: want feed in that hospital at that point in time.

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Speaker 3: And how are you at this point You're obviously just

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Speaker 3: in the moment of trying to keep Leo calm and

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Speaker 3: try and reassure him. Yes, but at this point you

255
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Speaker 3: must have some escalating fear.

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Speaker 2: I did.

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Speaker 1: I I just didn't know what was happening.

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Speaker 2: I'd never seen either of my children like this before.

259
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Speaker 2: And the worry of the people there, but I still

260
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Speaker 2: had this idea in my mind that he just got

261
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Speaker 2: some virus and into given maybe any biotics or something,

262
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Speaker 2: and then you know, in a few days he'll be better.

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Speaker 1: You know.

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Speaker 2: We were due to fly home, I think in a

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Speaker 2: few days later, and I kept saying to the medical staff, Oh,

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Speaker 2: should I cancel our flight or we'll be out of

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Speaker 2: here but we and they're like, oh, we don't want

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Speaker 2: to say yes or no, And I said I'll just

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Speaker 2: keep it.

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Speaker 1: But then one doctor who I always.

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Speaker 2: Remember him, one doctor came in and when I asked,

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Speaker 2: he was like, absolutely, you're not making that flight. He's like,

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Speaker 2: he has to at least have been below the fort

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Speaker 2: forty degrees fever for a few days before you can

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Speaker 2: even think about leaving this.

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Speaker 1: So I was like, okay, I've been told, now I'll

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Speaker 1: cancel my flight.

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Speaker 2: So yeah, that was that was when that's still not

279
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Speaker 2: quite any concept of how long we would be there.

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Speaker 2: Like at that point they said after the failed lumber

281
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Speaker 2: puncture that they were we needed to stay a night

282
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Speaker 2: and he'd go on to general and aesthetic the next

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Speaker 2: day and we'd have an anetheesist come and and do

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Speaker 2: the procedure.

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Speaker 1: So yeah, I thought maybe one or two nights wo'd

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Speaker 1: be there, so.

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Speaker 3: You at this point are still hoping that you might

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Speaker 3: make your flight home.

289
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Speaker 4: Instead, what happened.

290
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Speaker 2: Well, he just deteriorated very quickly at that hospital, I mean,

291
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Speaker 2: and there was nothing to do with the treatment. It

292
00:16:09,239 --> 00:16:12,799
Speaker 2: was just his condition. And they'd come into the room

293
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Speaker 2: and they'd do all these tests like can you feel

294
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Speaker 2: this on your legs? And you know, they'd shine the

295
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Speaker 2: light in his eyes and something I got used to

296
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Speaker 2: after many many months of it happening, and you know.

297
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Speaker 1: Testing for strength.

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Speaker 2: Then probably he said to me at one point when

299
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Speaker 2: he needed to use the bathroom, like, I can't we

300
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Speaker 2: properly because if you've got boys.

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Speaker 4: Yes, I've got three boys.

302
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Speaker 2: I've got three, so you know when they we they

303
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Speaker 2: think it's fun to start and stuff and start and stop.

304
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Speaker 4: So that's what.

305
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Speaker 2: He was kind of doing. And I was thinking, oh,

306
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Speaker 2: he's it's just a thing. I could hear him in

307
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Speaker 2: the toilet do it. And then he said to me,

308
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Speaker 2: I can't, like, I can't do we properly, and you know,

309
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Speaker 2: so I try the water. And after about maybe two

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Speaker 2: or three times that happening, I was like, maybe something's

311
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Speaker 2: not right, so I told the nurse.

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Speaker 1: She noted it.

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Speaker 2: They were like, well, put the shower on. They were

314
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Speaker 2: offering all these ideas, play this, blah blah blah. But

315
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Speaker 2: he started to get he was getting sick up basically,

316
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Speaker 2: and getting quite anxious about it. So I don't think

317
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Speaker 2: either of us has slept very much at this point,

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Speaker 2: and he wanted me in the little hospital bed with him.

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Speaker 1: They're exhausting days, so exhausting.

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Speaker 2: Yes, it's another level of tired, which just continued. Yeah,

321
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Speaker 2: but at that point we were getting up every ten

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Speaker 2: fifteen minutes because he would say, I need to go now,

323
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Speaker 2: and so we'd kind of go into the bathroom. We

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Speaker 2: had our own little room there, and we'd go into

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Speaker 2: the bathroom and he'd try and then he'd stand there

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Speaker 2: and then he'd sit down, and then he'd apologize to

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Speaker 2: me and say, I'm so sorry, Mom, I can't go,

328
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Speaker 2: and I'm like, you don't need to be you don't

329
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Speaker 2: need to be sorry. It's like, it's okay. And they'd

330
00:18:00,679 --> 00:18:02,959
Speaker 2: said if you can't, if you couldn't pass your EYND,

331
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Speaker 2: they were going to try enemies. Maybe he was constipated,

332
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Speaker 2: and then if that didn't work, they would insert a catheter,

333
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Speaker 2: and so I think that's why I was encouraging him

334
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Speaker 2: a lot to try and go, because I couldn't picture

335
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Speaker 2: how he was going to cope having a catheter inserted,

336
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Speaker 2: knowing how sensitive.

337
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Speaker 1: That he is. But yeah, he got to that point.

338
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Speaker 4: After the break.

339
00:18:29,919 --> 00:18:34,959
Speaker 3: Michelle recalls the moment when Leo's condition rapidly declined and

340
00:18:34,999 --> 00:18:43,119
Speaker 3: what happened after. So you're on this downhill descent now,

341
00:18:43,159 --> 00:18:46,399
Speaker 3: whereas only a few days earlier you were celebrating with

342
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Speaker 3: your family. Yes, and your boy, even though he had

343
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Speaker 3: his challenges, was a normal eight year old boy.

344
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Speaker 2: Yeah, all of life, having fun, and you know, he

345
00:18:56,159 --> 00:18:58,239
Speaker 2: was running around. He loves my sister's dog, so he

346
00:18:58,319 --> 00:19:01,079
Speaker 2: was always like running around with them. That he was

347
00:19:01,119 --> 00:19:02,679
Speaker 2: getting up early in the morning to go out the

348
00:19:02,679 --> 00:19:04,719
Speaker 2: dog flat door at the top of the stairs, go

349
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Speaker 2: down down.

350
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Speaker 1: Way with them. Like, Yeah, he was always on the go.

351
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Speaker 2: And you know this, he'd look forward to this trip

352
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Speaker 2: for such a long time because he had had a

353
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Speaker 2: difficult year at school, which was the first he'd had

354
00:19:21,479 --> 00:19:25,519
Speaker 2: a really difficult year at school, and this was you know,

355
00:19:25,559 --> 00:19:27,279
Speaker 2: he was really excited for this trip.

356
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Speaker 1: So it was.

357
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Speaker 2: He was it was hard because I thought, you know,

358
00:19:32,439 --> 00:19:35,479
Speaker 2: he only had a few days and you know now

359
00:19:35,479 --> 00:19:38,839
Speaker 2: he hasn't really got to enjoy yet. But yeah, that

360
00:19:39,359 --> 00:19:43,119
Speaker 2: kind of going back to that night when he was

361
00:19:43,199 --> 00:19:47,519
Speaker 2: still trying to to go oilet, Yeah, because I've been

362
00:19:47,519 --> 00:19:49,759
Speaker 2: getting up so much and you know, i'd get in there.

363
00:19:49,879 --> 00:19:52,199
Speaker 2: At one point I heard him get up and he

364
00:19:52,319 --> 00:19:55,839
Speaker 2: was on the side closest to the toilet door. And

365
00:19:55,879 --> 00:19:57,999
Speaker 2: I still, even though I know and I've read the

366
00:19:57,999 --> 00:20:01,359
Speaker 2: medical reports, I still kind of have this guilt that

367
00:20:03,039 --> 00:20:06,479
Speaker 2: I should have been quicker almost because I was like

368
00:20:06,759 --> 00:20:08,759
Speaker 2: so tired, so kind of you know, you get yourself

369
00:20:08,799 --> 00:20:11,679
Speaker 2: out of bed. And by the time I kind of

370
00:20:11,759 --> 00:20:15,599
Speaker 2: stood up the door, he was in the bathroom and

371
00:20:15,679 --> 00:20:18,719
Speaker 2: the door was closed, and then I just heard this

372
00:20:19,919 --> 00:20:24,839
Speaker 2: the biggest like smashed against the door, and I just

373
00:20:24,919 --> 00:20:27,199
Speaker 2: screamed because I knew he hit his head on the

374
00:20:27,199 --> 00:20:30,319
Speaker 2: door collapsed, Yeah, and I just screamed for the nurses.

375
00:20:30,359 --> 00:20:32,399
Speaker 2: I can't remember if there was a button or something.

376
00:20:32,919 --> 00:20:34,559
Speaker 2: I mean, they had to a bank, so just remember

377
00:20:34,559 --> 00:20:38,279
Speaker 2: they rushed in and like when we opened the door,

378
00:20:39,519 --> 00:20:41,319
Speaker 2: he was just kind of there on the ground and

379
00:20:41,359 --> 00:20:44,599
Speaker 2: he wasn't even responsive to it. Like it was like

380
00:20:44,679 --> 00:20:47,559
Speaker 2: nothing had happened. But this this was seriously so loud.

381
00:20:48,119 --> 00:20:51,919
Speaker 2: So he hid his head with such force and I

382
00:20:52,039 --> 00:20:52,759
Speaker 2: just thought.

383
00:20:52,679 --> 00:20:53,879
Speaker 4: He was unconscious.

384
00:20:54,159 --> 00:20:56,279
Speaker 1: No, he wasn't, or had he passed?

385
00:20:56,439 --> 00:20:57,839
Speaker 4: Had he passed out?

386
00:20:57,919 --> 00:21:00,919
Speaker 5: When he he may collapsed or yeah he made and

387
00:21:00,999 --> 00:21:03,559
Speaker 5: he had No he didn't even know that it had

388
00:21:03,599 --> 00:21:06,999
Speaker 5: happened because when the nurses were there asking, you know,

389
00:21:07,079 --> 00:21:11,679
Speaker 5: doing their valuation type of thing, it was as if

390
00:21:11,719 --> 00:21:12,559
Speaker 5: nothing had happened.

391
00:21:12,679 --> 00:21:15,879
Speaker 2: Now that I'm never going over how loud that was,

392
00:21:15,919 --> 00:21:20,679
Speaker 2: like that would have really really hurt. And you know,

393
00:21:20,719 --> 00:21:23,119
Speaker 2: then he still couldn't do anything. So that's when they suggested, like,

394
00:21:23,519 --> 00:21:25,799
Speaker 2: we'll get the chair and he can sit in the shower.

395
00:21:25,879 --> 00:21:29,119
Speaker 2: Maybe that will help. And that was the first time

396
00:21:29,519 --> 00:21:33,599
Speaker 2: he started. He said to me, where are my swords? Mum?

397
00:21:34,279 --> 00:21:36,959
Speaker 1: And I was thinking because he hit.

398
00:21:36,919 --> 00:21:38,519
Speaker 2: His head, and I was like, oh, wish, he's my

399
00:21:38,559 --> 00:21:41,479
Speaker 2: three swords. Where are my three swords gone? And you know,

400
00:21:41,519 --> 00:21:43,199
Speaker 2: he went to worry. So I was like, I'm not sure,

401
00:21:43,399 --> 00:21:45,999
Speaker 2: like you know, I don't know. And then he was like,

402
00:21:45,999 --> 00:21:48,959
Speaker 2: what's that stuff moving around the room and and there's

403
00:21:48,959 --> 00:21:50,719
Speaker 2: stuff crawling on your pajamas?

404
00:21:50,839 --> 00:21:51,679
Speaker 1: What are they?

405
00:21:52,039 --> 00:21:56,719
Speaker 2: And I I was blaming myself because I wasn't quick enough,

406
00:21:56,759 --> 00:21:58,719
Speaker 2: and so I thought it was because his head.

407
00:21:58,959 --> 00:22:01,879
Speaker 1: Now this was happening, But yeah.

408
00:22:01,599 --> 00:22:04,839
Speaker 3: How are the nurses then, when he was saying things

409
00:22:04,919 --> 00:22:07,599
Speaker 3: like that, did that Were they attributing it to the

410
00:22:07,679 --> 00:22:09,519
Speaker 3: knock on the head or that he'd been a bit

411
00:22:09,559 --> 00:22:13,759
Speaker 3: delirious or was that a warning sort of flag for

412
00:22:13,799 --> 00:22:14,519
Speaker 3: them as well?

413
00:22:14,679 --> 00:22:16,719
Speaker 2: Yeah, I think it was a warning for them, but

414
00:22:16,759 --> 00:22:20,479
Speaker 2: they also had to consider that it might have been

415
00:22:20,519 --> 00:22:22,279
Speaker 2: the knock on his head. And I only know this

416
00:22:22,679 --> 00:22:25,799
Speaker 2: because of like I've had a look at the medical records.

417
00:22:26,719 --> 00:22:29,199
Speaker 4: Yes, and that's the only reason at the time.

418
00:22:29,439 --> 00:22:33,359
Speaker 3: At the time, it's very hard to convey to people

419
00:22:33,519 --> 00:22:38,199
Speaker 3: how very much in the moment you are and operating

420
00:22:38,239 --> 00:22:43,119
Speaker 3: with such limited information. Yes, you know, you're kind of

421
00:22:43,239 --> 00:22:46,799
Speaker 3: scanning for clues. You're trying to hear conversations that nurses

422
00:22:46,879 --> 00:22:50,759
Speaker 3: or doctors are having outside of your earshot. You're trying

423
00:22:50,759 --> 00:22:52,239
Speaker 3: to read them when they come in.

424
00:22:52,479 --> 00:22:55,159
Speaker 2: Absolutely, and I am big on that, Like I feel

425
00:22:55,159 --> 00:22:58,359
Speaker 2: like I can always pick up on what's happening.

426
00:22:58,439 --> 00:23:02,119
Speaker 1: But clearly I was off my guard at that point.

427
00:23:01,999 --> 00:23:07,879
Speaker 2: And they can't remember kind of what happened in between that.

428
00:23:07,959 --> 00:23:09,759
Speaker 2: But I remember when we were back in the bed

429
00:23:10,279 --> 00:23:13,199
Speaker 2: and a nurse came in because they hadn't seen that.

430
00:23:13,199 --> 00:23:15,559
Speaker 1: That was just Leo and I in the shower at

431
00:23:15,599 --> 00:23:17,319
Speaker 1: that point, and then when they came in.

432
00:23:17,519 --> 00:23:20,559
Speaker 2: I mentioned it to them and then at an escalator

433
00:23:20,639 --> 00:23:22,919
Speaker 2: because he was saying to the nurse, why do you

434
00:23:22,959 --> 00:23:26,079
Speaker 2: have a drone in your uniform? Like why is there

435
00:23:26,119 --> 00:23:30,679
Speaker 2: poke balls floating around outside the room? And so they

436
00:23:31,639 --> 00:23:36,639
Speaker 2: witnessed that, which is great because I think it is

437
00:23:36,679 --> 00:23:42,599
Speaker 2: a it is a symptom of auto in diseasis as well,

438
00:23:42,639 --> 00:23:44,879
Speaker 2: which I found out many months later.

439
00:23:45,359 --> 00:23:49,239
Speaker 3: Right, And also sometimes I think as the mother in

440
00:23:49,279 --> 00:23:54,319
Speaker 3: this instance, when you're relaying things, sometimes it's dismissed as

441
00:23:54,799 --> 00:23:59,879
Speaker 3: you being hyper vigilant or you know, over obviously overcautious

442
00:23:59,959 --> 00:24:03,679
Speaker 3: or whatever. But for them to witness it, yes, they twigged.

443
00:24:03,759 --> 00:24:06,279
Speaker 3: Then did they that it had more significance?

444
00:24:06,679 --> 00:24:10,239
Speaker 2: Yeah, So that's when that's when more tests and more

445
00:24:10,279 --> 00:24:12,959
Speaker 2: doctors started to come in. And this is a regional hospital,

446
00:24:12,999 --> 00:24:15,599
Speaker 2: so they were limited with what they could do. I mean,

447
00:24:15,959 --> 00:24:18,039
Speaker 2: like I said, the stuff, they were brilliant, but they

448
00:24:18,039 --> 00:24:24,679
Speaker 2: had limited resources. They took him to maybe CT scanner.

449
00:24:24,719 --> 00:24:26,719
Speaker 2: I think they had there. So they did that on

450
00:24:26,759 --> 00:24:29,639
Speaker 2: his brain to see if there had been any injuries

451
00:24:29,719 --> 00:24:33,079
Speaker 2: or anything like that, but nothing was picked up. And

452
00:24:33,119 --> 00:24:35,599
Speaker 2: then they had got to the point where they had

453
00:24:35,639 --> 00:24:40,039
Speaker 2: to insert the catheter and they gave him I think

454
00:24:40,039 --> 00:24:48,999
Speaker 2: it was medazlan the medication, and it took the doctor.

455
00:24:49,039 --> 00:24:51,079
Speaker 2: There was two nurses kind of holding him down, and

456
00:24:51,079 --> 00:24:53,519
Speaker 2: then I was there just kind of trying to relax him,

457
00:24:53,919 --> 00:24:56,359
Speaker 2: and I saw his eyes flicking into the back of

458
00:24:56,399 --> 00:24:59,159
Speaker 2: his head and I thought, Oh, that's the medication doing

459
00:24:59,199 --> 00:25:02,319
Speaker 2: that perhaps, like that's that's what that is. He was

460
00:25:02,319 --> 00:25:06,039
Speaker 2: still putting up in hell of a fight for tiny thing.

461
00:25:06,039 --> 00:25:10,559
Speaker 2: There was nothing of him. He was not He was said,

462
00:25:11,799 --> 00:25:15,079
Speaker 2: don't you which is good, you know, don't you touch me.

463
00:25:15,199 --> 00:25:19,399
Speaker 1: That's my privates. Don't you do whatever. I'm just trying

464
00:25:19,439 --> 00:25:21,159
Speaker 1: to bite them and stuff like that. And I'm like,

465
00:25:21,199 --> 00:25:24,359
Speaker 1: we'll watch out, like get you. And they once they

466
00:25:24,479 --> 00:25:26,279
Speaker 1: got the catheter in.

467
00:25:26,959 --> 00:25:29,719
Speaker 2: You know, I know a lot about bladders now for

468
00:25:30,319 --> 00:25:32,199
Speaker 2: eight nine years old and know a lot about them.

469
00:25:32,239 --> 00:25:35,159
Speaker 2: So he was only meant to at that point, I

470
00:25:35,199 --> 00:25:37,119
Speaker 2: think be able to hold about two hundred and fifty

471
00:25:37,159 --> 00:25:39,039
Speaker 2: three hundred and fifty meals of year.

472
00:25:39,079 --> 00:25:39,519
Speaker 1: Ie.

473
00:25:39,879 --> 00:25:41,599
Speaker 2: When they got the Catherine and drained it, there was

474
00:25:41,639 --> 00:25:43,959
Speaker 2: over a leader in there, which is.

475
00:25:44,559 --> 00:25:46,599
Speaker 3: Like because he hadn't because he hadn't been able to

476
00:25:46,759 --> 00:25:47,799
Speaker 3: urinate for so long.

477
00:25:48,079 --> 00:25:51,599
Speaker 2: Yes, yes, so that was just kind of the first

478
00:25:51,639 --> 00:25:55,359
Speaker 2: thing that was shutting down for him, and things started

479
00:25:55,399 --> 00:25:58,839
Speaker 2: to move quite quickly at that point. They were like,

480
00:25:58,919 --> 00:26:02,319
Speaker 2: we need to chop you down to Hobart. I think

481
00:26:02,359 --> 00:26:05,319
Speaker 2: around that same time his legs had stopped work as well,

482
00:26:06,079 --> 00:26:09,959
Speaker 2: and yeah, that was like just raising alarms.

483
00:26:10,239 --> 00:26:12,839
Speaker 1: So they still I'd never heard of auto immune deities.

484
00:26:12,879 --> 00:26:16,399
Speaker 2: Still at this point, I had no idea what was

485
00:26:16,439 --> 00:26:18,519
Speaker 2: wrong with him or what even might have.

486
00:26:18,559 --> 00:26:23,679
Speaker 3: Been had they proffered any any theories at this point,

487
00:26:23,839 --> 00:26:26,159
Speaker 3: or they were still just trying to arrest the symptoms

488
00:26:26,159 --> 00:26:27,479
Speaker 3: and work out what was going on.

489
00:26:28,039 --> 00:26:32,399
Speaker 2: Yeah, No, they hadn't suggested anything more than it could

490
00:26:32,399 --> 00:26:34,759
Speaker 2: be like a Bencher coocle type of thing. But they

491
00:26:34,799 --> 00:26:37,239
Speaker 2: were you know, you've got to give him permission to

492
00:26:37,279 --> 00:26:42,079
Speaker 2: treat him for whatever they think it might be without

493
00:26:42,159 --> 00:26:44,319
Speaker 2: having a diagnosis, just in case it is that until

494
00:26:44,319 --> 00:26:45,279
Speaker 2: they get a diagnosis.

495
00:26:45,319 --> 00:26:48,439
Speaker 1: And I was like, yes, like please do, Like I'm

496
00:26:48,479 --> 00:26:49,239
Speaker 1: not going to say.

497
00:26:49,079 --> 00:26:53,079
Speaker 4: No, so then you get choppered to Hobart.

498
00:26:53,479 --> 00:26:57,399
Speaker 2: Unfortunately not so up until that point, they'd been lovely

499
00:26:57,399 --> 00:26:59,399
Speaker 2: weather down there, and then there was a storm that

500
00:26:59,559 --> 00:27:03,319
Speaker 2: hit that morning, I think in Hobart, so they couldn't

501
00:27:03,359 --> 00:27:09,199
Speaker 2: choper us. So then they had to organize a like

502
00:27:09,359 --> 00:27:12,559
Speaker 2: ambulance transfer. So it was it was a long transfer,

503
00:27:12,639 --> 00:27:15,359
Speaker 2: but they had to like there's a shortage of ambulances

504
00:27:15,359 --> 00:27:17,039
Speaker 2: there as well, like it's a known kind of a

505
00:27:17,119 --> 00:27:19,759
Speaker 2: known thing down there, and they all have their areas,

506
00:27:19,799 --> 00:27:22,359
Speaker 2: so it wasn't just one ambulance that took us down there.

507
00:27:22,359 --> 00:27:24,559
Speaker 1: We'd have to get hot ving. So it was it

508
00:27:24,639 --> 00:27:25,799
Speaker 1: was probably twelve hours.

509
00:27:25,599 --> 00:27:28,719
Speaker 2: Later by this point, and he looked he was really

510
00:27:28,839 --> 00:27:31,159
Speaker 2: bad that I remember a nurse taking him out of

511
00:27:31,199 --> 00:27:33,679
Speaker 2: the room and it was the first She's like, oh,

512
00:27:33,679 --> 00:27:35,039
Speaker 2: you know, we can't believe you just sat in a

513
00:27:35,119 --> 00:27:36,239
Speaker 2: dark room the whole time.

514
00:27:36,279 --> 00:27:38,199
Speaker 1: And in my head I was thinking what else would

515
00:27:38,239 --> 00:27:38,839
Speaker 1: I be doing?

516
00:27:38,959 --> 00:27:41,639
Speaker 2: Like, where else would I be Like it wasn't even

517
00:27:41,679 --> 00:27:44,439
Speaker 2: a I didn't even think that it was a strange

518
00:27:44,439 --> 00:27:46,399
Speaker 2: thing to be doing. Just just sat in the darkness

519
00:27:46,519 --> 00:27:51,439
Speaker 2: quite so long, and I was like, he's not going

520
00:27:51,519 --> 00:27:53,119
Speaker 2: He's going to be Okay, isn't he like he's not

521
00:27:53,199 --> 00:27:55,479
Speaker 2: going to I'm not going to lose him, Like I

522
00:27:55,559 --> 00:27:58,399
Speaker 2: just remember saying to her like I can't live without him.

523
00:27:59,079 --> 00:28:01,559
Speaker 2: I couldn't agine, like I'm not going to be to

524
00:28:01,559 --> 00:28:06,239
Speaker 2: live without him, And and you know she couldn't. She

525
00:28:06,359 --> 00:28:10,079
Speaker 2: was lovely, but you couldn't say, and did.

526
00:28:09,879 --> 00:28:10,639
Speaker 4: She answer you?

527
00:28:13,319 --> 00:28:16,239
Speaker 3: Because they're careful with what they say. Yeah, and then

528
00:28:16,279 --> 00:28:18,839
Speaker 3: you notice that they're being careful with what they say.

529
00:28:19,119 --> 00:28:23,039
Speaker 2: Yeah, so yeah, I think it was something along that

530
00:28:23,279 --> 00:28:25,839
Speaker 2: they don't have any answers, but you know, I know

531
00:28:25,919 --> 00:28:29,599
Speaker 2: she's being positive. I just remember her being positive for me.

532
00:28:30,439 --> 00:28:33,279
Speaker 2: And it was late that night, so it would have

533
00:28:33,319 --> 00:28:34,279
Speaker 2: been about twelve hours.

534
00:28:34,279 --> 00:28:36,199
Speaker 1: So I've got I've got a photo of.

535
00:28:36,359 --> 00:28:42,399
Speaker 2: Him like getting stretched out and at that point hand

536
00:28:42,479 --> 00:28:46,799
Speaker 2: was it his right hand? Alligan moved was his right

537
00:28:46,839 --> 00:28:50,159
Speaker 2: hand by that stage, So within that twelve hours, Yeah,

538
00:28:50,199 --> 00:28:53,079
Speaker 2: his whole body was paralyzed.

539
00:28:52,559 --> 00:28:53,639
Speaker 1: Apart from this hand.

540
00:28:54,359 --> 00:28:57,279
Speaker 2: And they had he was in this stretch with seat

541
00:28:57,279 --> 00:29:00,239
Speaker 2: belts kind of like straps all over him to keep

542
00:29:00,319 --> 00:29:04,079
Speaker 2: him in. And yeah, that's when we first got into

543
00:29:04,079 --> 00:29:09,279
Speaker 2: the ambula and I had to drive thoughts seemed like

544
00:29:09,359 --> 00:29:11,759
Speaker 2: ages and then we have to get out and swap

545
00:29:11,799 --> 00:29:13,959
Speaker 2: the ambulance and this is you know over.

546
00:29:13,799 --> 00:29:15,879
Speaker 4: Wow, how many times did you have to swap?

547
00:29:18,359 --> 00:29:20,639
Speaker 2: So we swapped, so we were in four different ambulances,

548
00:29:20,639 --> 00:29:21,919
Speaker 2: so we had to swap three times.

549
00:29:21,959 --> 00:29:23,399
Speaker 4: Oh my goodness.

550
00:29:23,519 --> 00:29:26,279
Speaker 1: Yeah, so we had to go into one place.

551
00:29:26,319 --> 00:29:29,559
Speaker 2: And I can just remember marrying these hot tech, like

552
00:29:29,679 --> 00:29:33,359
Speaker 2: high tech ambulances and I'm sitting in and I'm exhausted,

553
00:29:33,359 --> 00:29:35,599
Speaker 2: and I'm trying not like you know, trying not to

554
00:29:35,639 --> 00:29:38,399
Speaker 2: see what I could see. Leo was also tired because

555
00:29:38,919 --> 00:29:41,839
Speaker 2: he shut his eyes and then his eyes ald dart

556
00:29:41,959 --> 00:29:44,559
Speaker 2: into his head and then he'd be awake again. And

557
00:29:45,839 --> 00:29:50,639
Speaker 2: like he that entire trip I would have been six

558
00:29:50,679 --> 00:29:53,519
Speaker 2: seven hours just because of the transfers like that that

559
00:29:53,639 --> 00:29:54,399
Speaker 2: slowed it down.

560
00:29:55,519 --> 00:29:58,919
Speaker 3: Is he capable of communicating with you at this point

561
00:29:59,039 --> 00:30:00,239
Speaker 3: or just the right hand?

562
00:30:00,359 --> 00:30:03,599
Speaker 2: That's is he He could use the right hand, but

563
00:30:04,039 --> 00:30:08,479
Speaker 2: at this when he was just pretty much constantly hallucinating,

564
00:30:08,559 --> 00:30:11,359
Speaker 2: so he was he was. I can just remember like

565
00:30:11,439 --> 00:30:13,679
Speaker 2: I was sitting let's see here, and he was like

566
00:30:13,759 --> 00:30:18,639
Speaker 2: laying there facing me, and he had like a clip

567
00:30:18,639 --> 00:30:20,479
Speaker 2: on his finger, like a blood pressure thing, and even

568
00:30:21,399 --> 00:30:25,239
Speaker 2: thinking it was like a McDonald's chicken nugget or something.

569
00:30:25,639 --> 00:30:27,679
Speaker 2: And then so he's talking like he was in a

570
00:30:27,759 --> 00:30:30,479
Speaker 2: drive through. I'll have like a happy meal with three

571
00:30:30,519 --> 00:30:34,159
Speaker 2: chicken nuggets or something, lad. And then he was talking

572
00:30:34,159 --> 00:30:36,719
Speaker 2: to my sister's dogs so I could hear their names.

573
00:30:37,439 --> 00:30:40,599
Speaker 2: And then every now and then he would get some

574
00:30:40,719 --> 00:30:42,279
Speaker 2: kind of control and he'd look at me and he'd

575
00:30:42,279 --> 00:30:45,319
Speaker 2: be like Mum, and I'm like, you know, I'm so here, sweetie.

576
00:30:45,839 --> 00:30:50,119
Speaker 1: But yeah, by the time the last.

577
00:30:49,879 --> 00:30:55,359
Speaker 2: Transfer before we were taking to the Hobart hospital, he

578
00:30:55,479 --> 00:30:58,199
Speaker 2: freaked out kind of like I could hear him because

579
00:30:58,239 --> 00:30:59,599
Speaker 2: he went out in the stretch and then I'd go

580
00:30:59,599 --> 00:31:01,479
Speaker 2: out the side door and then I'd go round to

581
00:31:01,599 --> 00:31:06,359
Speaker 2: him and I heard him call out like mom, like

582
00:31:06,439 --> 00:31:09,279
Speaker 2: where are you or something and I'm and I'm like

583
00:31:09,319 --> 00:31:13,799
Speaker 2: I'm right here, darling. And then he was like, don't

584
00:31:13,839 --> 00:31:17,799
Speaker 2: you leave me? Sorry, And I.

585
00:31:17,759 --> 00:31:19,799
Speaker 1: Was like, I'm not going to leave you, like I'm

586
00:31:20,159 --> 00:31:20,959
Speaker 1: she can't leave me.

587
00:31:21,319 --> 00:31:23,639
Speaker 6: You would have promise me don't leave me either, and

588
00:31:23,719 --> 00:31:27,719
Speaker 6: I'm That was really the last thing that he said

589
00:31:27,719 --> 00:31:33,359
Speaker 6: to me, because by the time we got too into

590
00:31:33,439 --> 00:31:40,319
Speaker 6: the into the whole art look into the ICU.

591
00:31:40,039 --> 00:31:44,479
Speaker 1: That was probably like the where reality really hit.

592
00:31:44,599 --> 00:31:48,359
Speaker 2: Like there's all of a sudden, all adoptors were there

593
00:31:48,399 --> 00:31:51,559
Speaker 2: and the beachs and this, and they were like chitty chatting. Yeah,

594
00:31:51,599 --> 00:31:56,079
Speaker 2: and his eyes were still just like really flickering, but

595
00:31:56,239 --> 00:31:59,239
Speaker 2: every now and then they'd look at me, so knew that.

596
00:31:59,359 --> 00:32:00,759
Speaker 2: So I was like, you know, I felt at that

597
00:32:00,799 --> 00:32:02,839
Speaker 2: point like I'm so tired.

598
00:32:02,839 --> 00:32:05,039
Speaker 1: I felt like I wanted to vomit or part us out.

599
00:32:05,079 --> 00:32:07,759
Speaker 1: And I was like, I I need him to be

600
00:32:07,799 --> 00:32:10,119
Speaker 1: able to see me if if he looks at me.

601
00:32:10,879 --> 00:32:14,319
Speaker 2: And then everyone was not there all of a sudden,

602
00:32:14,879 --> 00:32:17,719
Speaker 2: and there was a nurse in the like this little

603
00:32:17,839 --> 00:32:22,239
Speaker 2: waiting area, and then his mouth started to do this

604
00:32:22,279 --> 00:32:24,959
Speaker 2: thing where it just like started to like jut open

605
00:32:25,439 --> 00:32:26,679
Speaker 2: and it was scaring me.

606
00:32:26,759 --> 00:32:30,239
Speaker 1: I was like, yeah, like can you come and see this?

607
00:32:30,479 --> 00:32:32,799
Speaker 2: And so it was like wide open and like the

608
00:32:32,839 --> 00:32:37,039
Speaker 2: eyes like flickering and like a spasm. Yeah yeah, and

609
00:32:37,079 --> 00:32:39,839
Speaker 2: they and she said, can you get some videos of

610
00:32:39,879 --> 00:32:42,559
Speaker 2: it just in case. So I've got these horrible videos

611
00:32:42,559 --> 00:32:45,919
Speaker 2: that I've never deleted, which is good for research purposes,

612
00:32:45,919 --> 00:32:51,359
Speaker 2: I found out since, but yeah, these horrible videos that

613
00:32:51,439 --> 00:32:54,639
Speaker 2: show how quickly even more so that he declined within

614
00:32:55,159 --> 00:32:59,679
Speaker 2: maybe an hour of being there. Yeah, that by that

615
00:32:59,759 --> 00:33:03,479
Speaker 2: point his jaw was locked shut. He couldn't make eye

616
00:33:03,479 --> 00:33:07,439
Speaker 2: contact in his eye. We're just kind of just like this,

617
00:33:07,639 --> 00:33:11,319
Speaker 2: just backing his head the whole the whole time. Dad

618
00:33:11,439 --> 00:33:14,079
Speaker 2: put tubes off his nose at this point. I don't

619
00:33:14,159 --> 00:33:18,959
Speaker 2: remember when that happened, but I just thought at that point, like,

620
00:33:19,759 --> 00:33:23,199
Speaker 2: I can't see him like this. What's I just I

621
00:33:23,199 --> 00:33:25,799
Speaker 2: don't know what's happening. But I don't know if I'm

622
00:33:26,359 --> 00:33:28,839
Speaker 2: how I don't know if he's going to survive at

623
00:33:28,839 --> 00:33:29,319
Speaker 2: this point.

624
00:33:30,159 --> 00:33:31,999
Speaker 4: At this point, you're.

625
00:33:33,439 --> 00:33:36,319
Speaker 3: So you've already been in the hospital, the regional hospital.

626
00:33:36,439 --> 00:33:37,479
Speaker 4: Now you're at Hobart.

627
00:33:37,759 --> 00:33:43,719
Speaker 3: Yes, things have really taken a terrifying descent. Yes, yes,

628
00:33:43,759 --> 00:33:46,399
Speaker 3: are you talking to your mother? Are your sister and

629
00:33:46,519 --> 00:33:51,759
Speaker 3: Charlie back at their place? Who who's talking you through this?

630
00:33:51,839 --> 00:33:57,079
Speaker 3: Who's your counsel, who's comforting you, who's offering advice, who's

631
00:33:57,199 --> 00:33:58,359
Speaker 3: advocating for you?

632
00:33:59,519 --> 00:34:02,199
Speaker 2: Well, my sister was always there, and she only lived

633
00:34:02,199 --> 00:34:04,159
Speaker 2: a few minutes down the road from the hospital, so

634
00:34:04,279 --> 00:34:07,239
Speaker 2: if I needed anything, she would kind of come over

635
00:34:08,239 --> 00:34:11,959
Speaker 2: and chaut and like Charlie was there, but he was

636
00:34:12,479 --> 00:34:15,879
Speaker 2: as fifteen at the time, he wanted to go and

637
00:34:16,239 --> 00:34:19,079
Speaker 2: do fun stuff because it was the holidays. I don't yes, yes,

638
00:34:19,399 --> 00:34:23,399
Speaker 2: couldn't comprehend it. This was serious, I don't think at

639
00:34:23,439 --> 00:34:23,759
Speaker 2: that point.

640
00:34:23,879 --> 00:34:28,599
Speaker 3: Yes, he hadn't seen Leo at his worst then.

641
00:34:28,799 --> 00:34:31,839
Speaker 2: No, so he'd seen him when he first went into hospital,

642
00:34:32,159 --> 00:34:35,559
Speaker 2: and Leo had asked for him, but he was bored.

643
00:34:35,559 --> 00:34:37,239
Speaker 2: So he go and hang out with my brother like

644
00:34:37,319 --> 00:34:43,159
Speaker 2: him his uncle, so which I get. And maybe it

645
00:34:43,199 --> 00:34:45,519
Speaker 2: was like a way to protect himself as well.

646
00:34:45,879 --> 00:34:46,399
Speaker 4: Of course.

647
00:34:47,039 --> 00:34:50,439
Speaker 3: Yeah, I have to tell you, Michelle, as you're sharing

648
00:34:50,479 --> 00:34:54,879
Speaker 3: this with me, my eldest son was diagnosed with lukemia

649
00:34:55,039 --> 00:34:56,039
Speaker 3: when he was six.

650
00:34:56,439 --> 00:34:57,279
Speaker 1: Oh, my gosh.

651
00:34:57,559 --> 00:35:00,199
Speaker 3: And so a lot of what you're saying to me

652
00:35:00,359 --> 00:35:04,959
Speaker 3: I'm very familiar with. Yes, yes, just when you're hoping

653
00:35:04,999 --> 00:35:07,799
Speaker 3: that it's one thing and then it descends into something else,

654
00:35:07,839 --> 00:35:10,959
Speaker 3: and then you're reading the faces, the horror on the

655
00:35:10,999 --> 00:35:13,199
Speaker 3: faces of the doctor, and then you're taken into the

656
00:35:13,279 --> 00:35:14,399
Speaker 3: room with the tissues.

657
00:35:14,439 --> 00:35:16,719
Speaker 4: And so I am.

658
00:35:16,799 --> 00:35:20,519
Speaker 3: Really very much going on this this.

659
00:35:20,559 --> 00:35:21,919
Speaker 4: Cruel journey with you.

660
00:35:22,239 --> 00:35:23,199
Speaker 1: How old is he now?

661
00:35:24,399 --> 00:35:25,439
Speaker 4: Now he's twenty two.

662
00:35:25,559 --> 00:35:26,359
Speaker 1: Oh, that's awesome.

663
00:35:28,399 --> 00:35:31,279
Speaker 4: So you were.

664
00:35:31,159 --> 00:35:39,759
Speaker 3: At this point though, watching your boy disappear from you

665
00:35:40,039 --> 00:35:45,319
Speaker 3: effectively and go into I guess some other world.

666
00:35:46,079 --> 00:35:49,199
Speaker 2: Yeah, I just because I could see that he was

667
00:35:49,279 --> 00:35:54,399
Speaker 2: still prior to everything shutting down, I could still see

668
00:35:54,439 --> 00:35:58,479
Speaker 2: he was fighting, like trying to see me and.

669
00:35:58,439 --> 00:36:00,479
Speaker 4: So stay, trying to stay.

670
00:36:00,839 --> 00:36:03,679
Speaker 2: He really really was, and so he knew he was

671
00:36:03,719 --> 00:36:08,439
Speaker 2: still there, and it was I don't know the time frame.

672
00:36:08,959 --> 00:36:13,719
Speaker 2: They were like, this isn't a nice way to see anyone.

673
00:36:13,759 --> 00:36:17,079
Speaker 2: We need to go, and they took him down to

674
00:36:17,079 --> 00:36:22,159
Speaker 2: do a full brain and spine MRI and then they

675
00:36:22,199 --> 00:36:24,199
Speaker 2: said we're going to put him in an induced coma,

676
00:36:24,799 --> 00:36:27,879
Speaker 2: which I was it was this strange. I was so

677
00:36:27,959 --> 00:36:30,439
Speaker 2: happy to know that because I didn't want him to

678
00:36:30,479 --> 00:36:32,239
Speaker 2: be scared like that was the thing. I just say,

679
00:36:33,359 --> 00:36:35,719
Speaker 2: I don't want him to just be trapped like that

680
00:36:36,039 --> 00:36:39,759
Speaker 2: and be so scared. I would rather him not be

681
00:36:39,839 --> 00:36:42,839
Speaker 2: aware of kind of what was happening. And that's kind

682
00:36:42,839 --> 00:36:45,039
Speaker 2: of when my family started to come down, because I

683
00:36:45,079 --> 00:36:46,959
Speaker 2: was like, oh, you know, what time should we come down,

684
00:36:46,999 --> 00:36:49,479
Speaker 2: like the next day or something, and I was like yeah,

685
00:36:49,519 --> 00:36:56,199
Speaker 2: So they kind of all packed up and rented accommodation

686
00:36:56,359 --> 00:37:00,879
Speaker 2: down in Hoguard and where was Leo's dad in the

687
00:37:01,039 --> 00:37:04,559
Speaker 2: in the equation at this point, so he was still

688
00:37:04,559 --> 00:37:07,199
Speaker 2: there on the northwest coast and near South Wales, right

689
00:37:07,399 --> 00:37:10,839
Speaker 2: and I wrung him a few times and I was

690
00:37:10,879 --> 00:37:13,839
Speaker 2: like leaving a message up It's really important that you

691
00:37:13,919 --> 00:37:16,279
Speaker 2: pick up the phone now, like you really need to

692
00:37:16,319 --> 00:37:17,159
Speaker 2: pick the phone up.

693
00:37:18,319 --> 00:37:20,879
Speaker 1: And I think at at.

694
00:37:20,719 --> 00:37:23,159
Speaker 2: Some point in the first day of vioving in Hobart,

695
00:37:23,599 --> 00:37:26,559
Speaker 2: I said you need to come down to test Mania,

696
00:37:26,639 --> 00:37:30,319
Speaker 2: like you need to come down here, and he did, so, Yeah,

697
00:37:30,439 --> 00:37:34,639
Speaker 2: he flew down I think the day afterwards. Leo every

698
00:37:34,679 --> 00:37:36,759
Speaker 2: a few days and he had to be able to

699
00:37:36,759 --> 00:37:38,199
Speaker 2: get a flight, So yeah, he flew down.

700
00:37:39,359 --> 00:37:43,759
Speaker 3: And so when he saw Leo, Leo was in the

701
00:37:43,799 --> 00:37:45,599
Speaker 3: induced coma.

702
00:37:45,919 --> 00:37:48,039
Speaker 2: Yeah, you pretty much couldn't touch any part of Leo

703
00:37:48,119 --> 00:37:50,559
Speaker 2: by that point he was, so they.

704
00:37:52,559 --> 00:37:57,159
Speaker 1: Discovered so he's when we got there. They were doing

705
00:37:57,199 --> 00:37:58,039
Speaker 1: something with his stomach.

706
00:37:58,079 --> 00:38:01,679
Speaker 2: They had the nutric in in and they were seeing

707
00:38:01,759 --> 00:38:02,559
Speaker 2: which I didn't know.

708
00:38:02,679 --> 00:38:05,439
Speaker 1: They were testing to see if his stomach was digesting.

709
00:38:06,879 --> 00:38:10,319
Speaker 2: And they'd put a certain amount in and then they'd

710
00:38:10,759 --> 00:38:13,439
Speaker 2: aspirated out and they'd measure after a few hours how

711
00:38:13,519 --> 00:38:16,159
Speaker 2: much it digested. And I was like coming out black

712
00:38:16,199 --> 00:38:17,919
Speaker 2: and I was like, oh, it's because the last thing

713
00:38:17,919 --> 00:38:21,279
Speaker 2: he ate was chocolate brownies, because you know he likes

714
00:38:21,679 --> 00:38:22,399
Speaker 2: chocolate brownies.

715
00:38:22,399 --> 00:38:24,039
Speaker 1: He made them with my sister and they're like, oh,

716
00:38:24,039 --> 00:38:25,079
Speaker 1: that's blood.

717
00:38:25,319 --> 00:38:27,399
Speaker 2: And I was I didn't quite but I just didn't

718
00:38:27,439 --> 00:38:27,839
Speaker 2: quite believe.

719
00:38:27,919 --> 00:38:29,159
Speaker 1: I was like, what's chocolate brownie?

720
00:38:29,159 --> 00:38:29,239
Speaker 3: Is?

721
00:38:29,239 --> 00:38:31,439
Speaker 1: Like, how can that be blood? It's like the last

722
00:38:31,479 --> 00:38:31,999
Speaker 1: thing he ate.

723
00:38:32,559 --> 00:38:35,719
Speaker 2: And it turns out that his stomach had just shut down,

724
00:38:35,799 --> 00:38:41,879
Speaker 2: so that wasn't digesting. So you know, he had the

725
00:38:42,799 --> 00:38:44,719
Speaker 2: one of the nasal tubes into his stomach and then

726
00:38:44,719 --> 00:38:48,679
Speaker 2: they had to put another one below his stomach so

727
00:38:49,119 --> 00:38:52,759
Speaker 2: his body would get the nutrition. And I liked how

728
00:38:52,759 --> 00:38:54,359
Speaker 2: they explained it to me. They said, we're not going

729
00:38:54,399 --> 00:38:56,159
Speaker 2: to take the other one out in his stomach. We're

730
00:38:56,159 --> 00:38:57,399
Speaker 2: going to leave it there and we're going to keep

731
00:38:57,399 --> 00:39:00,399
Speaker 2: putting little bits of the nutricent in. And it's like

732
00:39:00,439 --> 00:39:03,559
Speaker 2: we're knocking on the door. I was saying, hello, don't forget,

733
00:39:03,639 --> 00:39:06,479
Speaker 2: like you know, uh, you know, just trying to wake

734
00:39:06,519 --> 00:39:07,239
Speaker 2: the stomach up.

735
00:39:07,719 --> 00:39:09,279
Speaker 4: Your right, what your job is?

736
00:39:09,599 --> 00:39:12,479
Speaker 2: Yeah, yeah, the stomach. Yeah, So they didn't want to

737
00:39:12,919 --> 00:39:14,279
Speaker 2: not kind of do that.

738
00:39:14,559 --> 00:39:18,959
Speaker 3: Next Michelle takes herself back to the time Leo spent

739
00:39:19,119 --> 00:39:30,199
Speaker 3: several weeks in an induced coma. So Leo is then

740
00:39:30,279 --> 00:39:33,199
Speaker 3: they put him in an induced coma? Yes, And have

741
00:39:33,319 --> 00:39:36,719
Speaker 3: they said to you how long they expect that is

742
00:39:36,799 --> 00:39:37,479
Speaker 3: going to be?

743
00:39:38,479 --> 00:39:40,679
Speaker 1: If they did, I don't recall, but I don't believe

744
00:39:40,759 --> 00:39:41,199
Speaker 1: they did.

745
00:39:41,479 --> 00:39:44,039
Speaker 3: You would have remembered if they had said to you,

746
00:39:44,639 --> 00:39:47,039
Speaker 3: because how long did he end up being in a coma?

747
00:39:48,679 --> 00:39:51,119
Speaker 2: Quite a few weeks, I think, yeah, Like if my

748
00:39:51,839 --> 00:39:54,439
Speaker 2: just trying to think the time frame, like after he'd

749
00:39:54,439 --> 00:39:56,959
Speaker 2: come back from the MRI, like I got to give

750
00:39:56,999 --> 00:39:58,959
Speaker 2: him a kiss and stuff down there, and then when

751
00:39:58,959 --> 00:40:00,999
Speaker 2: he came back, like he was incubated.

752
00:40:01,839 --> 00:40:05,279
Speaker 1: He had the both of the names or I don't

753
00:40:05,279 --> 00:40:06,599
Speaker 1: think they're called the nasal tubes.

754
00:40:07,199 --> 00:40:11,199
Speaker 2: He had had towers down each side of him with

755
00:40:12,519 --> 00:40:17,919
Speaker 2: you know, just needles cut like all in his legs everywhere.

756
00:40:18,039 --> 00:40:20,999
Speaker 2: There wasn't a lot of area that I could touch

757
00:40:21,119 --> 00:40:24,079
Speaker 2: him touch, yeah, not even to kind of to touch him.

758
00:40:24,119 --> 00:40:26,719
Speaker 2: So and I was a bit scared too, And it

759
00:40:26,799 --> 00:40:28,919
Speaker 2: was the nurses. It said to me, he's still your son,

760
00:40:29,119 --> 00:40:31,679
Speaker 2: like you can, you know, go and talk to him,

761
00:40:31,759 --> 00:40:32,679
Speaker 2: like touch his hair.

762
00:40:33,879 --> 00:40:36,839
Speaker 1: I didn't want to heard him whisper to him, Yeah,

763
00:40:36,959 --> 00:40:38,759
Speaker 1: and I did. They were great there.

764
00:40:38,799 --> 00:40:41,599
Speaker 2: They would say, you know, brush his teeth and they

765
00:40:41,839 --> 00:40:45,279
Speaker 2: have this special toothbrush and then the shower cap thing

766
00:40:45,319 --> 00:40:48,279
Speaker 2: that warmed up, and I think they could see that

767
00:40:48,359 --> 00:40:51,359
Speaker 2: I was in shock at that point, so they were

768
00:40:51,399 --> 00:40:54,999
Speaker 2: really trying to involve me and still being by him,

769
00:40:55,679 --> 00:40:57,959
Speaker 2: so I wasn't in the distance looking.

770
00:40:58,919 --> 00:41:02,639
Speaker 3: And then when you when he was in the coma.

771
00:41:03,159 --> 00:41:07,079
Speaker 3: So for those weeks, as well as keeping him sedated

772
00:41:07,599 --> 00:41:11,639
Speaker 3: and trying to stabilize him, they're obviously running just a

773
00:41:11,759 --> 00:41:13,919
Speaker 3: battery of tests, I imagine.

774
00:41:14,119 --> 00:41:15,879
Speaker 2: Yeah, So I found out there's a thing called an

775
00:41:15,919 --> 00:41:18,519
Speaker 2: infectious disease team, So.

776
00:41:18,399 --> 00:41:19,799
Speaker 1: They were there every day.

777
00:41:19,879 --> 00:41:23,599
Speaker 2: They came in and they'd ask me questions like has

778
00:41:23,639 --> 00:41:24,519
Speaker 2: he touched a horse?

779
00:41:24,999 --> 00:41:27,439
Speaker 1: Has there been a rat? Has there been this? And

780
00:41:27,759 --> 00:41:28,639
Speaker 1: my mind's like.

781
00:41:29,199 --> 00:41:32,239
Speaker 2: Clicking my oh, well, yeah he did that. And there

782
00:41:32,279 --> 00:41:33,959
Speaker 2: was a pony and he touched that and I'm thinking,

783
00:41:34,119 --> 00:41:38,519
Speaker 2: is that it? But everything, And they said to me,

784
00:41:38,599 --> 00:41:41,879
Speaker 2: at at some point they're in Hobart, we've got different

785
00:41:41,959 --> 00:41:45,239
Speaker 2: levels of tests that we've run and everything's come back negative,

786
00:41:45,279 --> 00:41:48,519
Speaker 2: and we're like on level five now, like and we're

787
00:41:48,559 --> 00:41:52,879
Speaker 2: not going to stop, but everything is coming back negative.

788
00:41:52,959 --> 00:41:56,039
Speaker 2: And I'm not sure how many lumber punctures I'd done

789
00:41:56,079 --> 00:41:57,999
Speaker 2: by this point, like in total, I think he had

790
00:41:58,039 --> 00:42:02,159
Speaker 2: six or seven. And that was when a neurologist first

791
00:42:02,399 --> 00:42:07,399
Speaker 2: came and started to talk about immune and yeah, that

792
00:42:07,439 --> 00:42:10,599
Speaker 2: he thought it was a He had a name Adam

793
00:42:10,639 --> 00:42:12,679
Speaker 2: I think one of the ones was that he thought

794
00:42:12,679 --> 00:42:16,079
Speaker 2: it might be and Moggret, I think was the other one.

795
00:42:16,119 --> 00:42:17,599
Speaker 2: He was trying to explain it to me, and like

796
00:42:18,239 --> 00:42:21,519
Speaker 2: he was like the smartest person I think I've ever met,

797
00:42:21,559 --> 00:42:24,279
Speaker 2: just hearing how he was talking and how he's trying

798
00:42:24,319 --> 00:42:28,919
Speaker 2: to simplify, you know, the description of everything. But at

799
00:42:28,959 --> 00:42:32,799
Speaker 2: the same time he was so caring as well and

800
00:42:33,759 --> 00:42:38,519
Speaker 2: in compassionate, and all the team there, like I I

801
00:42:38,639 --> 00:42:39,599
Speaker 2: just remember.

802
00:42:39,239 --> 00:42:41,479
Speaker 1: How supportive that they all were.

803
00:42:41,959 --> 00:42:45,599
Speaker 2: And we'd go off into the like a little family room,

804
00:42:45,639 --> 00:42:49,799
Speaker 2: and the doctor, the main doctor there, would sit there

805
00:42:49,799 --> 00:42:52,559
Speaker 2: and he was very honest, which I appreciate. He would

806
00:42:52,639 --> 00:42:56,879
Speaker 2: be like, you know, we don't know what's happening. At

807
00:42:56,879 --> 00:42:59,999
Speaker 2: this point, he's very vulnerable. There's no guarantee if he's

808
00:43:00,039 --> 00:43:03,959
Speaker 2: going to recover. If he does, it's it's not weeks

809
00:43:04,039 --> 00:43:06,639
Speaker 2: or anything that they said, Look, it's good months or years,

810
00:43:07,479 --> 00:43:12,159
Speaker 2: and I I was a little bit annoyed inside. I

811
00:43:12,319 --> 00:43:17,359
Speaker 2: just remember thinking and saying to them, well, he will recover,

812
00:43:17,519 --> 00:43:20,959
Speaker 2: like you don't know, Leo, like he will recover and

813
00:43:20,999 --> 00:43:23,639
Speaker 2: I've had all the time in the world. And He's like,

814
00:43:23,879 --> 00:43:25,919
Speaker 2: that's good then, and I was like, that's right, that's

815
00:43:25,999 --> 00:43:26,639
Speaker 2: what's happening.

816
00:43:27,839 --> 00:43:29,559
Speaker 1: Yeah, he will and that's yeah.

817
00:43:29,959 --> 00:43:35,519
Speaker 3: What were you thinking yourself at that point, like what

818
00:43:35,719 --> 00:43:39,319
Speaker 3: was the hardest moment? What were you seeing for yourself

819
00:43:39,439 --> 00:43:41,239
Speaker 3: in the future and for Leo.

820
00:43:42,759 --> 00:43:45,999
Speaker 2: I mean I did say that, but in honesty, I

821
00:43:46,079 --> 00:43:48,519
Speaker 2: did think I was going to lose him because his

822
00:43:48,639 --> 00:43:52,759
Speaker 2: lungs were collapsing and you know, then they'd have to

823
00:43:52,839 --> 00:43:55,279
Speaker 2: roll him over onto his stomach. It just seemed like

824
00:43:55,319 --> 00:43:57,039
Speaker 2: everything was just getting worse, and I think it was

825
00:43:57,159 --> 00:44:00,959
Speaker 2: kind of getting any better. There was talk of being

826
00:44:00,999 --> 00:44:04,359
Speaker 2: transferred over to Westmead, but they said that could be

827
00:44:04,359 --> 00:44:06,319
Speaker 2: in a few weeks. Like you know, I don't know.

828
00:44:07,519 --> 00:44:10,279
Speaker 2: I know how they'll do like iv IG and different

829
00:44:10,319 --> 00:44:11,119
Speaker 2: types of things.

830
00:44:11,879 --> 00:44:12,799
Speaker 4: What's iv IG.

831
00:44:13,519 --> 00:44:15,839
Speaker 1: Well, I learned these things, said I didn't know either.

832
00:44:17,359 --> 00:44:24,319
Speaker 2: It's a plasma infusion, which right, but the amount is

833
00:44:24,559 --> 00:44:28,719
Speaker 2: I think it needs three to five thousand plasma donations

834
00:44:28,879 --> 00:44:34,159
Speaker 2: per per dose. So there's they get approved, patients get

835
00:44:34,159 --> 00:44:36,999
Speaker 2: approved for two doses, and anything more you need government

836
00:44:37,039 --> 00:44:39,359
Speaker 2: approval just because of how expensive it is and how

837
00:44:39,599 --> 00:44:43,759
Speaker 2: much plasma they need to make these doses of the

838
00:44:43,799 --> 00:44:44,359
Speaker 2: iv ig.

839
00:44:45,279 --> 00:44:47,319
Speaker 1: So he kind of had that.

840
00:44:47,839 --> 00:44:48,959
Speaker 4: As it transpired.

841
00:44:49,039 --> 00:44:53,159
Speaker 3: You did end up then getting transferred to Sydney.

842
00:44:53,599 --> 00:44:57,039
Speaker 2: Yeah, so his lungs had collapsed at some point and

843
00:44:57,079 --> 00:44:59,319
Speaker 2: then they flipped him over and then they were okay,

844
00:44:59,519 --> 00:45:04,279
Speaker 2: and then the night they said another doctor had flown

845
00:45:04,279 --> 00:45:11,039
Speaker 2: in and his lungs collapsed again, and that at that point,

846
00:45:11,479 --> 00:45:16,199
Speaker 2: Like I remember, really my favorite times of the night

847
00:45:16,799 --> 00:45:19,279
Speaker 2: or day were like two or three, So everything was quiet,

848
00:45:19,399 --> 00:45:22,879
Speaker 2: and I'd hop up and I'd have like relaxing music

849
00:45:22,919 --> 00:45:25,559
Speaker 2: on for him, and I'd get like nice smells and

850
00:45:25,599 --> 00:45:27,319
Speaker 2: I'd try and rub oil, like.

851
00:45:27,279 --> 00:45:29,079
Speaker 1: His legs are so swollen, so I was just trying

852
00:45:29,079 --> 00:45:29,399
Speaker 1: to think.

853
00:45:29,799 --> 00:45:31,519
Speaker 2: I was trying to move him anything I could, because

854
00:45:31,519 --> 00:45:33,119
Speaker 2: I thought, you know, when he wakes up, if he

855
00:45:33,159 --> 00:45:34,599
Speaker 2: hasn't moved, these here going to be sore.

856
00:45:34,679 --> 00:45:36,799
Speaker 1: So I was just trying to move things.

857
00:45:36,839 --> 00:45:42,439
Speaker 2: And and then when i'd kind of maybe get to

858
00:45:42,439 --> 00:45:44,359
Speaker 2: sleep because it was like a pull out bed next

859
00:45:44,359 --> 00:45:45,239
Speaker 2: to him.

860
00:45:45,719 --> 00:45:49,039
Speaker 1: I'd put a pillow over my head and i'd get it.

861
00:45:49,079 --> 00:45:51,319
Speaker 2: I don't know, I hardly slept it all, but I

862
00:45:51,359 --> 00:45:55,199
Speaker 2: remember every time that I woke up and I heard

863
00:45:55,239 --> 00:45:57,399
Speaker 2: the beeps, I'd just start to cry. And I didn't

864
00:45:57,399 --> 00:45:58,999
Speaker 2: want to take the pillow off my face because I

865
00:45:59,679 --> 00:46:01,439
Speaker 2: didn't want I didn't want it to be real.

866
00:46:01,879 --> 00:46:04,839
Speaker 4: I didn't want to be where you were, what you

867
00:46:04,879 --> 00:46:05,719
Speaker 4: were looking at.

868
00:46:05,839 --> 00:46:06,719
Speaker 1: And just hearing it.

869
00:46:06,799 --> 00:46:09,079
Speaker 2: So I just just remember laying there crying with this

870
00:46:09,159 --> 00:46:12,759
Speaker 2: pillow over my face before I was brave enough to

871
00:46:12,839 --> 00:46:16,479
Speaker 2: take it off and go back into the reality.

872
00:46:17,759 --> 00:46:21,399
Speaker 1: But yeah, that the night when his lungs collapsed the

873
00:46:21,639 --> 00:46:25,119
Speaker 1: last time that that was it.

874
00:46:25,199 --> 00:46:29,399
Speaker 2: I thought I've lost him, and I threatened nurses because

875
00:46:29,439 --> 00:46:31,159
Speaker 2: Hobart Hospital is quite high.

876
00:46:31,239 --> 00:46:34,479
Speaker 1: They've got a beautiful, beautiful location there.

877
00:46:34,479 --> 00:46:37,999
Speaker 2: It's a nice new hospital for the kids, and I

878
00:46:38,079 --> 00:46:41,639
Speaker 2: just said, like, if he dies, I'm jumping off the roof,

879
00:46:41,959 --> 00:46:44,919
Speaker 2: like I can't live without him, you know, even thinking

880
00:46:44,919 --> 00:46:47,679
Speaker 2: that Charlie would be okay, like you know, because he's

881
00:46:47,679 --> 00:46:49,839
Speaker 2: got my he'll be all right, Like he's got my

882
00:46:49,879 --> 00:46:52,999
Speaker 2: sister and stuff, which is just a horrible thought, but clearly.

883
00:46:54,159 --> 00:46:55,399
Speaker 1: You're not thinking rationally.

884
00:46:55,919 --> 00:46:59,759
Speaker 2: I was just like walking around the corridors is back

885
00:46:59,759 --> 00:47:01,479
Speaker 2: and forth, back and forth, back and forth. I don't

886
00:47:01,479 --> 00:47:03,159
Speaker 2: know how many times, because I just I didn't know

887
00:47:03,199 --> 00:47:05,999
Speaker 2: what to do. And that was here now, like where

888
00:47:06,239 --> 00:47:09,479
Speaker 2: the raw flowing doctors are coming in the morning and

889
00:47:09,999 --> 00:47:12,159
Speaker 2: transferring you to to Westmeat.

890
00:47:12,679 --> 00:47:15,759
Speaker 1: So that was with his clatch lung and all.

891
00:47:16,239 --> 00:47:18,479
Speaker 2: So they're like, we needed they needed to do something

892
00:47:18,479 --> 00:47:22,479
Speaker 2: called plasmaphoresis, and there was someone at Hobart Hospital that

893
00:47:22,519 --> 00:47:24,199
Speaker 2: could do it, but they.

894
00:47:24,079 --> 00:47:27,399
Speaker 1: Were they'd never done it on someone as young as Leo.

895
00:47:27,839 --> 00:47:30,039
Speaker 1: So I don't blame them.

896
00:47:30,079 --> 00:47:32,439
Speaker 2: I wouldn't want to be putting that situation where that's

897
00:47:32,479 --> 00:47:33,719
Speaker 2: where I have to learn how to do it.

898
00:47:33,799 --> 00:47:36,159
Speaker 1: So they're like, on the main end, you've got to

899
00:47:36,159 --> 00:47:36,519
Speaker 1: go there.

900
00:47:36,679 --> 00:47:39,079
Speaker 3: And also at this point you must have been like,

901
00:47:40,559 --> 00:47:42,919
Speaker 3: if we have a chance, we have to get to

902
00:47:43,239 --> 00:47:46,479
Speaker 3: a bigger hospital with more resources and more access to

903
00:47:47,519 --> 00:47:51,519
Speaker 3: overseas technologies. You must have at this point gone, we

904
00:47:51,559 --> 00:47:52,759
Speaker 3: really need the cavalry.

905
00:47:53,399 --> 00:47:54,399
Speaker 1: Yeah, one hundred percent.

906
00:47:54,599 --> 00:47:56,359
Speaker 2: As scared as I was, because I had, like all

907
00:47:56,439 --> 00:48:00,439
Speaker 2: my family, they have my parents, my sisters, brothers, aunts

908
00:48:00,639 --> 00:48:04,919
Speaker 2: in laws. I was so I had kind of their support,

909
00:48:05,399 --> 00:48:08,999
Speaker 2: but I thought, this isn't about me. Leo's not getting

910
00:48:08,999 --> 00:48:12,439
Speaker 2: any better, Like he's not getting better, He's there's not

911
00:48:12,559 --> 00:48:17,439
Speaker 2: much more before the point he's gone. So yeah, it

912
00:48:17,599 --> 00:48:20,799
Speaker 2: was it just has to be done. And so they

913
00:48:21,159 --> 00:48:24,439
Speaker 2: probe the row flowing doctors have got a like a

914
00:48:24,559 --> 00:48:31,759
Speaker 2: jet and that I can't remember what time it was,

915
00:48:32,639 --> 00:48:34,839
Speaker 2: but I remember as they were it was it's a

916
00:48:34,919 --> 00:48:37,679
Speaker 2: huge thing. I don't know if you've ever seen the

917
00:48:37,999 --> 00:48:42,679
Speaker 2: transfer a patient connected to everything from the bed onto

918
00:48:42,719 --> 00:48:47,759
Speaker 2: the stretcher. It's so methodical. I've got it's it's a long,

919
00:48:47,799 --> 00:48:50,879
Speaker 2: long process. And I just remember my dad saying to me,

920
00:48:51,919 --> 00:48:55,999
Speaker 2: whatever happens, it's going to be okay. And now I

921
00:48:56,039 --> 00:48:57,959
Speaker 2: think I think he was thinking if it doesn't, I've

922
00:48:57,999 --> 00:49:01,999
Speaker 2: lost my grandchild and my daughter. And I I was

923
00:49:02,039 --> 00:49:04,679
Speaker 2: just thinking, yeah, maybe it's not going to be but

924
00:49:04,719 --> 00:49:05,879
Speaker 2: I didn't say anything.

925
00:49:06,359 --> 00:49:08,119
Speaker 1: And it was at that point.

926
00:49:07,879 --> 00:49:10,879
Speaker 2: Too, when they said, oh, we're not going to Westmead,

927
00:49:10,919 --> 00:49:13,519
Speaker 2: We're going to go to Randwick. Because I found out

928
00:49:13,599 --> 00:49:15,759
Speaker 2: later that the person that was doing that could do

929
00:49:15,839 --> 00:49:18,599
Speaker 2: that treatment. There was on holidays because it was January,

930
00:49:18,679 --> 00:49:22,879
Speaker 2: so you of course holidays, which kind of threw me

931
00:49:22,919 --> 00:49:29,119
Speaker 2: because Charlie had lost his best friend to cancer maybe

932
00:49:29,159 --> 00:49:31,839
Speaker 2: six months prior to that at Randwick, so all I'd

933
00:49:31,919 --> 00:49:34,759
Speaker 2: kind of heard at that point was really negative things

934
00:49:34,839 --> 00:49:37,719
Speaker 2: about the hospital from the parents.

935
00:49:38,319 --> 00:49:39,239
Speaker 1: You can't blame them.

936
00:49:39,959 --> 00:49:43,719
Speaker 2: So I'm really scared that we were going there, and

937
00:49:43,959 --> 00:49:45,839
Speaker 2: that was it. It was like a death sentence. And

938
00:49:45,919 --> 00:49:47,679
Speaker 2: I was like, I don't want to I don't want

939
00:49:47,759 --> 00:49:49,479
Speaker 2: him to go there. I never would have agreed to it.

940
00:49:50,079 --> 00:49:53,959
Speaker 3: And Charlie's where now, has he He's still in Tazzi

941
00:49:54,159 --> 00:49:55,719
Speaker 3: or he's gone back home.

942
00:49:55,799 --> 00:49:58,879
Speaker 2: No, he was still in Tazzi, so he was I

943
00:49:58,919 --> 00:50:00,759
Speaker 2: didn't even know where he was half the time, but

944
00:50:00,759 --> 00:50:04,399
Speaker 2: I knew he was with family somewhere. He was really

945
00:50:04,559 --> 00:50:06,239
Speaker 2: struggling seeing Leo like that.

946
00:50:06,879 --> 00:50:07,839
Speaker 4: Yes, of course.

947
00:50:08,079 --> 00:50:08,279
Speaker 2: Yeah.

948
00:50:08,799 --> 00:50:12,559
Speaker 7: And and that is one of the things about when

949
00:50:13,439 --> 00:50:17,119
Speaker 7: when you have a child that needs all your attention,

950
00:50:17,799 --> 00:50:22,079
Speaker 7: it's all your attention, yea, absolutely, and the other child

951
00:50:22,239 --> 00:50:25,719
Speaker 7: or children in the family often you just like will

952
00:50:25,759 --> 00:50:27,319
Speaker 7: catch up with them later.

953
00:50:28,759 --> 00:50:31,359
Speaker 4: And in the meantime, this was your focus.

954
00:50:31,719 --> 00:50:34,679
Speaker 2: It was and the fact that I was thinking that

955
00:50:34,759 --> 00:50:37,679
Speaker 2: he would be okay as well, like if Leo went

956
00:50:37,759 --> 00:50:39,879
Speaker 2: and I was just planning on ending out, and you know,

957
00:50:39,919 --> 00:50:42,079
Speaker 2: I've never been suicidal, but in that point in time,

958
00:50:42,119 --> 00:50:46,799
Speaker 2: I thought I couldn't imagine ever having to live without him,

959
00:50:47,799 --> 00:50:50,039
Speaker 2: and luckily I didn't have to.

960
00:50:50,839 --> 00:50:54,759
Speaker 3: Okay, So this is where we get a slight upswing,

961
00:50:55,439 --> 00:51:03,279
Speaker 3: maybe not immediately, but is the good news or is

962
00:51:03,319 --> 00:51:07,679
Speaker 3: it a positive happening when you get the diagnosis and

963
00:51:07,759 --> 00:51:08,719
Speaker 3: how does that happen?

964
00:51:09,199 --> 00:51:13,039
Speaker 2: So we'd been in Randwick for I think a few

965
00:51:13,039 --> 00:51:15,239
Speaker 2: weeks still, so he was still in an ICU and

966
00:51:15,319 --> 00:51:16,479
Speaker 2: like we rocked up, he's.

967
00:51:16,359 --> 00:51:18,199
Speaker 4: Still in a coma. He's still in a coma.

968
00:51:18,279 --> 00:51:19,439
Speaker 2: I'm not sure if he was in a coma or

969
00:51:19,519 --> 00:51:21,719
Speaker 2: he was just unresponsive at this point, so he was

970
00:51:21,879 --> 00:51:24,599
Speaker 2: just yeah, so either just unconscious or a coma, I'm

971
00:51:24,599 --> 00:51:26,959
Speaker 2: not one hundred percent. But he was still attached to everything.

972
00:51:27,479 --> 00:51:31,039
Speaker 2: His lungs still weren't working, and nothing was kind of working,

973
00:51:31,079 --> 00:51:34,119
Speaker 2: and the machines were literally keeping him alive. And you know,

974
00:51:34,159 --> 00:51:36,639
Speaker 2: when we rocked up, they weren't expecting him because all

975
00:51:36,679 --> 00:51:39,039
Speaker 2: the paperwork had been transferred to Westmeads, so it was

976
00:51:39,159 --> 00:51:42,919
Speaker 2: kind of like panic stations and short disaster even more

977
00:51:42,959 --> 00:51:46,079
Speaker 2: disaster us. Well, you know, the neurologists came the next

978
00:51:46,119 --> 00:51:49,439
Speaker 2: day and then the plasma faresa started and he ended

979
00:51:49,519 --> 00:51:51,039
Speaker 2: up having like eight rounds of that.

980
00:51:51,559 --> 00:51:52,279
Speaker 4: Oh he did.

981
00:51:52,839 --> 00:51:53,439
Speaker 1: Yeah, so.

982
00:51:54,999 --> 00:51:57,199
Speaker 2: That's when like he had to he still got scars

983
00:51:57,239 --> 00:51:58,679
Speaker 2: on his body, so they had to put like the

984
00:51:58,759 --> 00:52:00,399
Speaker 2: needle thing into.

985
00:52:01,919 --> 00:52:03,399
Speaker 1: In his growing kind of area.

986
00:52:03,519 --> 00:52:06,839
Speaker 2: And it's period hours they'd take all his blood out

987
00:52:07,119 --> 00:52:10,239
Speaker 2: as his bload process, take remove his plasma and then

988
00:52:10,759 --> 00:52:12,959
Speaker 2: you know, the blood goes back in with saline or

989
00:52:12,959 --> 00:52:17,359
Speaker 2: something like that. So like even I think it was

990
00:52:17,439 --> 00:52:19,519
Speaker 2: during that period when he had those While he was

991
00:52:19,519 --> 00:52:22,519
Speaker 2: having those eight rounds, the neurologists.

992
00:52:21,879 --> 00:52:25,279
Speaker 1: Came in one morning and he said, oh, no.

993
00:52:26,559 --> 00:52:30,399
Speaker 2: You know, we've got some good news, okay, And it's like,

994
00:52:30,519 --> 00:52:33,319
Speaker 2: we finally have a positive marker on one of the

995
00:52:33,359 --> 00:52:36,519
Speaker 2: lumber puncture tests that were sent away in Hobart.

996
00:52:37,159 --> 00:52:40,239
Speaker 1: And that's so is that it's autoimmune.

997
00:52:40,239 --> 00:52:43,119
Speaker 2: And now he said the name, because he's super intelligent,

998
00:52:44,359 --> 00:52:48,639
Speaker 2: it was g fap Astro's psytopathy. And then he goes,

999
00:52:48,759 --> 00:52:53,559
Speaker 2: but it's so extremely rare. He's like, we've not seen

1000
00:52:53,559 --> 00:52:56,519
Speaker 2: a case of it before. We've only got case studies

1001
00:52:56,879 --> 00:53:01,519
Speaker 2: to do our research on and like he was discovered

1002
00:53:01,719 --> 00:53:04,159
Speaker 2: the same year Lea was born, like in two thousand

1003
00:53:04,199 --> 00:53:05,599
Speaker 2: and six, So.

1004
00:53:06,559 --> 00:53:09,039
Speaker 4: Which is extraordinary, isn't it. Yeah?

1005
00:53:09,119 --> 00:53:11,359
Speaker 2: Yeah, I always thought that's mean, Like it'ld always stuck

1006
00:53:11,359 --> 00:53:13,399
Speaker 2: to me, and it's saying that he was born that

1007
00:53:13,519 --> 00:53:16,359
Speaker 2: was when they discovered it and.

1008
00:53:16,239 --> 00:53:16,999
Speaker 4: What is it?

1009
00:53:17,319 --> 00:53:17,399
Speaker 3: What?

1010
00:53:18,279 --> 00:53:20,559
Speaker 4: So it's an autoimmune disease.

1011
00:53:20,919 --> 00:53:25,439
Speaker 2: Yeah, So it was his entire brain and spine and

1012
00:53:25,479 --> 00:53:28,399
Speaker 2: the ninja's were swollen. So that's what that's why he'd

1013
00:53:28,439 --> 00:53:33,679
Speaker 2: become like he had because the swelling and they.

1014
00:53:35,199 --> 00:53:37,119
Speaker 1: Which makes me think, gosh, he was brave when he

1015
00:53:37,119 --> 00:53:37,919
Speaker 1: was complaining.

1016
00:53:37,599 --> 00:53:40,239
Speaker 2: About headaches and sore eyes, like you know, as an adult,

1017
00:53:40,319 --> 00:53:43,119
Speaker 2: I think we'd be so much more vocal if that's

1018
00:53:43,159 --> 00:53:45,359
Speaker 2: what was going on with our body. You know, I've

1019
00:53:45,359 --> 00:53:48,159
Speaker 2: read so many case studies and trying to find out

1020
00:53:48,199 --> 00:53:49,439
Speaker 2: as much as I can about it.

1021
00:53:49,799 --> 00:53:51,919
Speaker 1: They still don't know why it happened to Leo.

1022
00:53:52,079 --> 00:53:55,359
Speaker 2: Sometimes it can happen if there's a tumor or an

1023
00:53:55,359 --> 00:53:59,079
Speaker 2: autoimmune disease already. You know, there's a few things they

1024
00:53:59,159 --> 00:54:01,199
Speaker 2: know that can cause it, and there's all different levels

1025
00:54:01,239 --> 00:54:03,639
Speaker 2: as well, So some people only kind of get wobbly

1026
00:54:03,759 --> 00:54:06,679
Speaker 2: legs or you know, a few little symptoms, or it

1027
00:54:07,479 --> 00:54:11,319
Speaker 2: seemed like he just got absolutely everything, absolutely everything.

1028
00:54:11,439 --> 00:54:16,319
Speaker 3: Yeah, and what so when you know, because the worst

1029
00:54:16,359 --> 00:54:19,639
Speaker 3: thing that can happen is that you have a diagnosis

1030
00:54:19,679 --> 00:54:20,719
Speaker 3: and there's no treatment.

1031
00:54:21,319 --> 00:54:23,399
Speaker 4: But that's just cruel.

1032
00:54:24,319 --> 00:54:27,439
Speaker 3: But they did have a treatment plan and a treatment

1033
00:54:27,519 --> 00:54:28,839
Speaker 3: pathing for LEO.

1034
00:54:29,159 --> 00:54:33,079
Speaker 2: So they said, so everything that they've done beforehand, treating

1035
00:54:33,999 --> 00:54:38,959
Speaker 2: for other autoimmune diseases does also benefit this autoimmune disease.

1036
00:54:38,999 --> 00:54:44,039
Speaker 2: Everything they'd been doing was helping fight this, and they

1037
00:54:44,119 --> 00:54:46,679
Speaker 2: said that they're one of the things they find that

1038
00:54:46,839 --> 00:54:51,959
Speaker 2: works most positive for improvements is really high dose steroids

1039
00:54:51,999 --> 00:54:54,079
Speaker 2: like prisoner Zone. I don't know why I've never let

1040
00:54:54,199 --> 00:54:55,319
Speaker 2: right it work correctly.

1041
00:54:55,959 --> 00:54:59,079
Speaker 4: He was read in this loan. Yes we yeah, so

1042
00:54:59,559 --> 00:55:00,919
Speaker 4: I learned how to say that one.

1043
00:55:01,439 --> 00:55:02,719
Speaker 1: It's got some ls and stuff.

1044
00:55:03,079 --> 00:55:05,199
Speaker 4: Yeah, that's a popular one.

1045
00:55:06,119 --> 00:55:09,199
Speaker 1: He was on massive doses of that.

1046
00:55:10,159 --> 00:55:14,279
Speaker 2: And one of the new neurologists came down and she

1047
00:55:14,359 --> 00:55:15,919
Speaker 2: gave me a case study. She's like, this is the

1048
00:55:15,919 --> 00:55:19,119
Speaker 2: most recent pediatric case study that we found on this

1049
00:55:19,199 --> 00:55:22,279
Speaker 2: autoimmune disease. Like, so you can have a look at it.

1050
00:55:22,319 --> 00:55:25,079
Speaker 2: And then that made me you know, someone had died

1051
00:55:25,159 --> 00:55:28,279
Speaker 2: on it, this had happened. There was only a few cases,

1052
00:55:28,279 --> 00:55:31,999
Speaker 2: and I was like, what when did they start giving

1053
00:55:32,079 --> 00:55:34,279
Speaker 2: him this or this? Because you know, I was basing

1054
00:55:34,279 --> 00:55:36,439
Speaker 2: it all on when the little one died, like and

1055
00:55:36,599 --> 00:55:38,359
Speaker 2: what they thought might have happened.

1056
00:55:38,759 --> 00:55:40,519
Speaker 1: So I was looking too much into it.

1057
00:55:40,599 --> 00:55:43,759
Speaker 2: But it's like, you know, there's no results up at

1058
00:55:43,759 --> 00:55:45,879
Speaker 2: this point, then you can try these two drugs. And

1059
00:55:45,919 --> 00:55:49,119
Speaker 2: after they've done everything and there was still no improvement,

1060
00:55:49,239 --> 00:55:52,479
Speaker 2: I was saying to them, well, I read that there's

1061
00:55:52,479 --> 00:55:54,399
Speaker 2: two other drugs that you can use. Can you start

1062
00:55:54,439 --> 00:55:58,639
Speaker 2: doing those? And they're like, let's just wait because there's

1063
00:55:58,679 --> 00:56:02,759
Speaker 2: they know, let's just wait and I don't know. A

1064
00:56:02,799 --> 00:56:07,079
Speaker 2: few days he's eyes started to open, so that was

1065
00:56:07,119 --> 00:56:10,159
Speaker 2: really positive. But then there was nothing again for a

1066
00:56:10,159 --> 00:56:12,879
Speaker 2: few days, and I in my head thought, oh, he's

1067
00:56:12,919 --> 00:56:16,799
Speaker 2: just defeated. He's woken up and no thanks, this is

1068
00:56:16,879 --> 00:56:20,119
Speaker 2: too hard. So yeah, then there was nothing and I

1069
00:56:20,199 --> 00:56:23,839
Speaker 2: kind of thought he'd given up. But then slowly, you know,

1070
00:56:23,919 --> 00:56:26,119
Speaker 2: he did start to stay awake for longer.

1071
00:56:27,079 --> 00:56:30,479
Speaker 3: What were you saying to him in this period because

1072
00:56:30,559 --> 00:56:34,479
Speaker 3: you were sitting vigil by him constantly.

1073
00:56:34,799 --> 00:56:38,039
Speaker 4: Yes, so I never left him.

1074
00:56:38,159 --> 00:56:39,239
Speaker 1: To go to the toilet and stuff.

1075
00:56:39,239 --> 00:56:43,199
Speaker 2: I had to, yes, but you know, apart from that, Yeah,

1076
00:56:43,239 --> 00:56:45,359
Speaker 2: I slept on the floor for the first few nights

1077
00:56:45,519 --> 00:56:47,239
Speaker 2: until I got titles and they'd to sleep on the

1078
00:56:47,239 --> 00:56:48,479
Speaker 2: floor next to his bed anymore.

1079
00:56:48,519 --> 00:56:49,439
Speaker 1: Then they had kind of had.

1080
00:56:49,279 --> 00:56:51,879
Speaker 2: A chair there because it was the old hospital, like

1081
00:56:51,879 --> 00:56:53,079
Speaker 2: they've got the just opened.

1082
00:56:52,799 --> 00:56:54,999
Speaker 1: The new one boos the old hospital at that point.

1083
00:56:56,559 --> 00:56:59,839
Speaker 1: So yeah, I just kind of sat there they were.

1084
00:57:00,759 --> 00:57:02,559
Speaker 2: I was kind of watching what the nurses were doing

1085
00:57:02,639 --> 00:57:05,879
Speaker 2: and kind of trying to learn different things, you know,

1086
00:57:06,519 --> 00:57:11,839
Speaker 2: placing pillows and stuff for pressure saws. You know, he

1087
00:57:11,879 --> 00:57:13,639
Speaker 2: was only he was in a nappy at that point.

1088
00:57:13,799 --> 00:57:15,959
Speaker 2: That was all he had, and he was he'd been

1089
00:57:16,319 --> 00:57:18,359
Speaker 2: he was so backed up, you know, there's so much

1090
00:57:18,439 --> 00:57:21,279
Speaker 2: and like stuff. They were trying to get everything out,

1091
00:57:21,799 --> 00:57:23,559
Speaker 2: you know, that was still trying to be friendly. Call

1092
00:57:23,599 --> 00:57:25,679
Speaker 2: it like old poonami type of thing to try and

1093
00:57:25,679 --> 00:57:27,399
Speaker 2: make chokes, you know, trying to wait for that.

1094
00:57:27,399 --> 00:57:29,479
Speaker 1: To come out. And yeah, I think I.

1095
00:57:29,399 --> 00:57:30,839
Speaker 2: Was just kind of trying to learn from them because

1096
00:57:30,839 --> 00:57:34,239
Speaker 2: I knew when he was if you you know, when

1097
00:57:34,239 --> 00:57:36,759
Speaker 2: he was going to wake up, that he was going

1098
00:57:36,799 --> 00:57:39,639
Speaker 2: to be more comfortable with me doing as much as

1099
00:57:40,719 --> 00:57:41,679
Speaker 2: what needed to be done.

1100
00:57:41,719 --> 00:57:43,359
Speaker 1: Then kind of a stranger just because of.

1101
00:57:43,359 --> 00:57:46,399
Speaker 4: Who he was and what were you saying to him.

1102
00:57:47,239 --> 00:57:49,679
Speaker 2: I didn't tell him how long he'd been in a camera.

1103
00:57:49,719 --> 00:57:52,199
Speaker 2: I didn't tell him it was Nintaszi. We were just

1104
00:57:52,959 --> 00:57:56,079
Speaker 2: I was just talking because about Finnegan, my sister's dogs,

1105
00:57:56,119 --> 00:58:00,119
Speaker 2: and Ollie. I was reading books. He loves the Roadblocks books,

1106
00:58:00,159 --> 00:58:02,319
Speaker 2: so I'm just reading those to him.

1107
00:58:03,119 --> 00:58:05,119
Speaker 3: And was there any were you looking at this point

1108
00:58:05,159 --> 00:58:08,559
Speaker 3: for any sign that he was there or could hear

1109
00:58:08,599 --> 00:58:12,239
Speaker 3: you or could tell what was going on, or you

1110
00:58:12,319 --> 00:58:14,119
Speaker 3: were just no.

1111
00:58:14,199 --> 00:58:16,159
Speaker 1: I definitely was, but there was no.

1112
00:58:16,439 --> 00:58:21,319
Speaker 2: I wasn't getting any indication that he knew A use

1113
00:58:21,319 --> 00:58:22,719
Speaker 2: to put earbuds in his ears.

1114
00:58:22,519 --> 00:58:25,119
Speaker 1: At nighttime just in case and have like you know,

1115
00:58:25,199 --> 00:58:27,039
Speaker 1: like forest chanty kind of.

1116
00:58:27,039 --> 00:58:29,679
Speaker 2: Music, and so he didn't have to hear the thing

1117
00:58:29,839 --> 00:58:33,879
Speaker 2: and the and the noise of the hospital, because I

1118
00:58:33,919 --> 00:58:35,159
Speaker 2: just thought, if you can hear that, he's going to

1119
00:58:35,239 --> 00:58:39,239
Speaker 2: be scared. So I was just trying to make it

1120
00:58:39,239 --> 00:58:41,359
Speaker 2: as relaxing as possible for him.

1121
00:58:41,359 --> 00:58:43,719
Speaker 1: And yeah, just read lots of books.

1122
00:58:43,799 --> 00:58:48,319
Speaker 2: And yeah, at that's time, I thought it was hard,

1123
00:58:48,319 --> 00:58:50,239
Speaker 2: but it was when he started to open his eyes.

1124
00:58:50,319 --> 00:58:52,759
Speaker 1: That was that was difficult?

1125
00:58:53,879 --> 00:58:56,559
Speaker 4: And why was that difficult?

1126
00:58:58,759 --> 00:59:01,559
Speaker 2: Because he couldn't communicate and he would just stare at me,

1127
00:59:02,279 --> 00:59:06,679
Speaker 2: and I would try and come up with a way

1128
00:59:06,719 --> 00:59:09,119
Speaker 2: to communicate, like, let's, you know, blink sick.

1129
00:59:09,119 --> 00:59:11,479
Speaker 1: Can he blink once for yes and twice for no?

1130
00:59:11,839 --> 00:59:14,279
Speaker 2: And you know, I'd ask him a question and he

1131
00:59:15,239 --> 00:59:18,559
Speaker 2: would purposely do the blinks. But then it was trying

1132
00:59:18,559 --> 00:59:21,399
Speaker 2: to figure out the next questions to try and help him,

1133
00:59:21,439 --> 00:59:25,559
Speaker 2: and that's when he kind of just shut his eyes again,

1134
00:59:25,679 --> 00:59:27,479
Speaker 2: like you know, and I felt like I was failing

1135
00:59:27,559 --> 00:59:29,679
Speaker 2: him because I didn't know what the right questions were

1136
00:59:29,799 --> 00:59:31,599
Speaker 2: or what he kind of needed, and.

1137
00:59:32,319 --> 00:59:36,159
Speaker 3: Because everything would have been so terribly hard for him,

1138
00:59:36,919 --> 00:59:40,599
Speaker 3: even a blink would have been would have taken all

1139
00:59:40,679 --> 00:59:41,959
Speaker 3: the effort in the world.

1140
00:59:42,599 --> 00:59:44,639
Speaker 1: Yeah, I imagine so absolutely.

1141
00:59:44,879 --> 00:59:48,199
Speaker 2: And then as he started to heal a bit more

1142
00:59:48,239 --> 00:59:51,399
Speaker 2: and they were they you know, a week more down

1143
00:59:51,439 --> 00:59:54,999
Speaker 2: the track, and like he wouldn't sleep either. At that point,

1144
00:59:54,999 --> 00:59:57,639
Speaker 2: he was just eyes open. So I was like, I

1145
00:59:57,639 --> 01:00:01,279
Speaker 2: can't leave because I don't want him to not see

1146
01:00:01,319 --> 01:00:05,799
Speaker 2: me kind of there, and then he as they were like, oh,

1147
01:00:05,839 --> 01:00:09,079
Speaker 2: his lungs seemed to be starting to work by themselves again,

1148
01:00:09,199 --> 01:00:14,359
Speaker 2: like they were looking at the charts and and like,

1149
01:00:14,399 --> 01:00:19,359
Speaker 2: we don't want to excavate him while he's not ready.

1150
01:00:19,359 --> 01:00:20,559
Speaker 1: We want to give him the best chance.

1151
01:00:20,559 --> 01:00:22,519
Speaker 2: We want to leave it there so the steroids can

1152
01:00:22,559 --> 01:00:27,199
Speaker 2: work and get his lungs stronger. And that, oh god,

1153
01:00:27,199 --> 01:00:29,559
Speaker 2: I hated that part of the thing, because he was

1154
01:00:29,919 --> 01:00:32,479
Speaker 2: he'd looked at me desperation for help, and I've just

1155
01:00:32,519 --> 01:00:37,319
Speaker 2: felt so helpless. He was gagging on the the tubes

1156
01:00:37,519 --> 01:00:39,439
Speaker 2: and you know they have to, you know, and they

1157
01:00:39,559 --> 01:00:45,399
Speaker 2: suction and the suction thing into his life lamb and yeah,

1158
01:00:45,439 --> 01:00:47,399
Speaker 2: and into his cheeks and you'd be trying to bite,

1159
01:00:47,599 --> 01:00:49,959
Speaker 2: bite down on it because it must have just felt

1160
01:00:49,999 --> 01:00:52,479
Speaker 2: horrible and been scary. But it was when he was

1161
01:00:52,599 --> 01:00:56,159
Speaker 2: gagging on it, and I'm just thinking, oh, and you

1162
01:00:56,319 --> 01:00:58,479
Speaker 2: just look at me for help, Like I just knew

1163
01:00:58,519 --> 01:01:00,279
Speaker 2: what his eyes were saying. It was just like, you know,

1164
01:01:00,839 --> 01:01:03,759
Speaker 2: help me, mum. And I I remember having a one

1165
01:01:03,799 --> 01:01:05,279
Speaker 2: thought and I've said this to a few people that

1166
01:01:05,399 --> 01:01:09,679
Speaker 2: I just went, I can't do this, like I can't

1167
01:01:10,199 --> 01:01:13,039
Speaker 2: be here and not help him, like this is breaking

1168
01:01:13,079 --> 01:01:13,639
Speaker 2: my heart.

1169
01:01:13,719 --> 01:01:16,479
Speaker 3: And then just it's like you're torturing you like you're

1170
01:01:16,519 --> 01:01:17,519
Speaker 3: torturing your son.

1171
01:01:17,679 --> 01:01:20,879
Speaker 2: I felt like it, absolutely, And but as quick as

1172
01:01:20,879 --> 01:01:25,479
Speaker 2: I had that thought, I had the thought that I'm

1173
01:01:25,519 --> 01:01:28,079
Speaker 2: not the one suffering here. He's the one suffering. So

1174
01:01:28,199 --> 01:01:30,799
Speaker 2: don't you dare go anywhere. You need to stay here

1175
01:01:30,879 --> 01:01:33,879
Speaker 2: and you know, and be strong for him.

1176
01:01:34,079 --> 01:01:34,279
Speaker 1: Yeah.

1177
01:01:34,279 --> 01:01:39,879
Speaker 3: Absolutely, Michelle, there's no doubt that you've been strong for him.

1178
01:01:39,359 --> 01:01:41,719
Speaker 4: No, like, no doubt. Extraordinary.

1179
01:01:41,999 --> 01:01:45,439
Speaker 3: Yeah, when was the first time that he spoke to you?

1180
01:01:45,919 --> 01:01:47,559
Speaker 4: And how was that?

1181
01:01:47,559 --> 01:01:48,559
Speaker 1: That was so emotional.

1182
01:01:48,719 --> 01:01:52,159
Speaker 2: So when they told me they were going to attempt

1183
01:01:52,159 --> 01:01:54,559
Speaker 2: to excavate him, I'm sure that's the word.

1184
01:01:54,599 --> 01:01:56,719
Speaker 1: I might be saying it wrong, but they're like, you can't.

1185
01:01:56,759 --> 01:01:58,239
Speaker 4: Is that when they take the tubes out?

1186
01:01:58,519 --> 01:02:00,839
Speaker 2: Yes, and then they've got it put the mask on him,

1187
01:02:00,839 --> 01:02:03,039
Speaker 2: which is really tight, and I was thinking, I don't

1188
01:02:03,079 --> 01:02:04,799
Speaker 2: know which one is going to hate more than that

1189
01:02:05,279 --> 01:02:06,319
Speaker 2: all the how tight.

1190
01:02:06,119 --> 01:02:07,239
Speaker 1: The mask is going to be.

1191
01:02:07,919 --> 01:02:10,999
Speaker 2: And so I had to kind of wait outside, and

1192
01:02:11,039 --> 01:02:13,399
Speaker 2: I get why, because it's probably a horrible thing for

1193
01:02:13,479 --> 01:02:16,799
Speaker 2: a parent to see that procedure. And then they came

1194
01:02:16,839 --> 01:02:19,959
Speaker 2: out and said he's ready, and I went in, and.

1195
01:02:21,359 --> 01:02:23,399
Speaker 1: Yeah, I was thinking I was just praying that he

1196
01:02:23,439 --> 01:02:23,919
Speaker 1: could talk.

1197
01:02:24,119 --> 01:02:26,919
Speaker 2: And I just remember and I've got a video of it,

1198
01:02:27,239 --> 01:02:29,439
Speaker 2: and I'm like, oh, I it's like.

1199
01:02:29,519 --> 01:02:32,079
Speaker 1: Sweetheart, and I'm like, like.

1200
01:02:32,119 --> 01:02:34,679
Speaker 2: I love you. Can you say anything? And you can

1201
01:02:34,759 --> 01:02:36,999
Speaker 2: hear my voice just going into crying. It was like

1202
01:02:37,199 --> 01:02:39,399
Speaker 2: no chance to be strong. And then he looked at

1203
01:02:39,439 --> 01:02:42,119
Speaker 2: me and he and this little little weak voice is

1204
01:02:42,199 --> 01:02:46,879
Speaker 2: like like hi, Like I love you too, and yeah,

1205
01:02:47,199 --> 01:02:50,599
Speaker 2: that was the best, the best thing I've ever in

1206
01:02:50,679 --> 01:02:53,959
Speaker 2: my life. And in hearing that, I just thought, as well,

1207
01:02:54,039 --> 01:02:57,119
Speaker 2: thank goodness, Like now he's that. They weren't sure that

1208
01:02:57,159 --> 01:03:00,119
Speaker 2: I'd have to put the put it back in or

1209
01:03:00,159 --> 01:03:03,239
Speaker 2: how his lungs would heal, but this just goes to

1210
01:03:03,239 --> 01:03:04,879
Speaker 2: show how strong he is. I said to the whole

1211
01:03:04,879 --> 01:03:06,839
Speaker 2: time that once he's better, you know, because he's always

1212
01:03:06,839 --> 01:03:10,439
Speaker 2: been in therapy for his you know, his autism and

1213
01:03:10,479 --> 01:03:15,399
Speaker 2: stuff and always gave it ridiculous, you know, two thousand

1214
01:03:15,399 --> 01:03:18,279
Speaker 2: percent and fight amusing sometimes when they say can you

1215
01:03:18,319 --> 01:03:21,039
Speaker 2: do this, and you know, act like it was an

1216
01:03:21,079 --> 01:03:23,759
Speaker 2: Olympic sport and you're like, you can come down a bit.

1217
01:03:23,799 --> 01:03:27,159
Speaker 2: And I just thought he's going to hate that mask.

1218
01:03:27,439 --> 01:03:30,959
Speaker 2: And yeah, they thought he'd have to have that on

1219
01:03:31,039 --> 01:03:33,279
Speaker 2: for a few weeks. I think it was only a

1220
01:03:33,319 --> 01:03:34,839
Speaker 2: few days he had to have it on, and I

1221
01:03:34,839 --> 01:03:40,479
Speaker 2: think he disliked that mask so much forced himself to

1222
01:03:42,399 --> 01:03:45,799
Speaker 2: cope without it. And yeah, so they were like, you know,

1223
01:03:45,999 --> 01:03:47,479
Speaker 2: we didn't think it was going to be this quick.

1224
01:03:47,479 --> 01:03:50,279
Speaker 2: And at that point that's we tell you what. That

1225
01:03:50,359 --> 01:03:53,039
Speaker 2: boy is a fighter, isn't he one hundred percent?

1226
01:03:53,759 --> 01:03:56,039
Speaker 4: His mom's a fighter, and he's a fighter.

1227
01:03:56,399 --> 01:04:00,319
Speaker 2: You know, I fell apart in behind the scenes when

1228
01:04:00,359 --> 01:04:04,079
Speaker 2: he was when he couldn't see me as soon as

1229
01:04:04,119 --> 01:04:06,519
Speaker 2: he woke. That was when I was like, Okay, tears

1230
01:04:06,519 --> 01:04:09,359
Speaker 2: stop now. Tears are stopping for me. Now it's his

1231
01:04:09,439 --> 01:04:12,159
Speaker 2: turn to if he needs to cry, it's his turn

1232
01:04:12,199 --> 01:04:13,079
Speaker 2: to kind of cry.

1233
01:04:13,159 --> 01:04:14,599
Speaker 1: Now I can't be crying anymore.

1234
01:04:15,319 --> 01:04:20,279
Speaker 3: Yeah, and then there was a continued journey back, slow

1235
01:04:20,479 --> 01:04:22,359
Speaker 3: but journey back to wellness.

1236
01:04:22,879 --> 01:04:26,439
Speaker 2: Yes, so that at that point they were like, we

1237
01:04:26,519 --> 01:04:29,839
Speaker 2: can go to the ward now, and which is great

1238
01:04:29,879 --> 01:04:34,479
Speaker 2: because the ICU was so noisy. It was so it

1239
01:04:34,559 --> 01:04:37,159
Speaker 2: was so noisy and overwhelming for him as well.

1240
01:04:37,239 --> 01:04:42,239
Speaker 3: And to be in a normal ward is like heaven

1241
01:04:42,639 --> 01:04:47,359
Speaker 3: compared to ICU. Absolutely, it is a stranger definition of heaven.

1242
01:04:47,479 --> 01:04:48,319
Speaker 3: Really changes.

1243
01:04:49,039 --> 01:04:51,759
Speaker 2: Yeah, And I lived on one of those pull out

1244
01:04:51,759 --> 01:04:54,519
Speaker 2: beds you know there's those little pull out couch sorry

1245
01:04:54,559 --> 01:05:01,399
Speaker 2: things for much over five months and I never complained

1246
01:05:01,439 --> 01:05:03,959
Speaker 2: for a second because it was fine. Like I was

1247
01:05:03,999 --> 01:05:06,119
Speaker 2: next to him, were comfortable. What more could ask for?

1248
01:05:06,159 --> 01:05:07,999
Speaker 2: I didn't have to be separated from him?

1249
01:05:08,159 --> 01:05:12,959
Speaker 4: So what what does your life look like now with

1250
01:05:13,119 --> 01:05:14,399
Speaker 4: Leo and Charlie?

1251
01:05:15,359 --> 01:05:15,919
Speaker 1: Very different?

1252
01:05:16,319 --> 01:05:20,799
Speaker 2: Like after Like we stayed in that ward for about

1253
01:05:20,839 --> 01:05:23,879
Speaker 2: four and a half months and before we got to

1254
01:05:23,879 --> 01:05:28,199
Speaker 2: transfer to the Ronald McDonald house, and that was heavenly.

1255
01:05:28,279 --> 01:05:29,519
Speaker 2: I just have to say that when he got to

1256
01:05:29,519 --> 01:05:31,879
Speaker 2: sleep in a real bed for the first five and

1257
01:05:31,919 --> 01:05:33,639
Speaker 2: the pillows, everything about.

1258
01:05:33,479 --> 01:05:38,679
Speaker 3: So lovely place and starlight are amazing as well when

1259
01:05:38,719 --> 01:05:41,799
Speaker 3: you've got a kid in long days in hospital. Yes,

1260
01:05:42,239 --> 01:05:45,039
Speaker 3: people can't even conceive of how happy you are to

1261
01:05:45,079 --> 01:05:47,039
Speaker 3: see captain starlight.

1262
01:05:46,719 --> 01:05:49,799
Speaker 1: And he has a favorite like to start with, he didn't.

1263
01:05:50,119 --> 01:05:52,839
Speaker 1: He was just like in the ward because he was

1264
01:05:52,919 --> 01:05:53,839
Speaker 1: totally paralyzed.

1265
01:05:53,839 --> 01:05:56,559
Speaker 2: He could talk, we couldn't eat still, so he's learning

1266
01:05:56,599 --> 01:05:59,519
Speaker 2: how to eat and he's super thirsty. I was hoping,

1267
01:05:59,919 --> 01:06:01,479
Speaker 2: I hope. It's so hard to share it more like

1268
01:06:01,559 --> 01:06:04,199
Speaker 2: I was hoping that he wouldn't remember any of that.

1269
01:06:05,199 --> 01:06:07,159
Speaker 2: And I asked him later and I was like, do

1270
01:06:07,199 --> 01:06:09,239
Speaker 2: you remember being in icing or something. He's like, yeah,

1271
01:06:09,239 --> 01:06:11,639
Speaker 2: I remember hearing someone talk about the food that they

1272
01:06:11,679 --> 01:06:13,959
Speaker 2: were eating, and they were having sausages or something. He's like,

1273
01:06:13,959 --> 01:06:20,839
Speaker 2: and I just wanted sausages so bad. And just how

1274
01:06:20,879 --> 01:06:21,679
Speaker 2: thirsty he was.

1275
01:06:21,879 --> 01:06:25,199
Speaker 4: Well, that's interesting, isn't it to know, Yes.

1276
01:06:25,719 --> 01:06:29,319
Speaker 3: When you think they can't here or you don't know

1277
01:06:29,359 --> 01:06:30,519
Speaker 3: how conscious they are.

1278
01:06:30,719 --> 01:06:34,159
Speaker 2: Yeah, and he could hear the food and and yeah,

1279
01:06:34,199 --> 01:06:37,279
Speaker 2: I just remember he had to he was thirsty, and

1280
01:06:37,319 --> 01:06:38,519
Speaker 2: he kept going, I'm so thirsty.

1281
01:06:38,519 --> 01:06:40,959
Speaker 1: And that's so you could just have the cotton tips

1282
01:06:40,999 --> 01:06:41,879
Speaker 1: and put the water in it.

1283
01:06:42,319 --> 01:06:45,159
Speaker 2: And I felt so filty, so I'd like, really soak

1284
01:06:45,239 --> 01:06:46,239
Speaker 2: those cotton tips.

1285
01:06:48,439 --> 01:06:50,879
Speaker 4: So I was really trying and wet his lips.

1286
01:06:50,959 --> 01:06:53,879
Speaker 2: And yes, yeah, But once we got up to the

1287
01:06:53,919 --> 01:06:58,759
Speaker 2: ward and the captain started to come in, he was

1288
01:06:59,239 --> 01:07:00,519
Speaker 2: I mean, he was still so very.

1289
01:07:00,359 --> 01:07:05,199
Speaker 4: Starlight by the way people like the cat happens the starlight,

1290
01:07:05,279 --> 01:07:06,119
Speaker 4: that's our captain.

1291
01:07:06,599 --> 01:07:10,399
Speaker 2: He was. He was still so six and being in

1292
01:07:10,439 --> 01:07:14,519
Speaker 2: somewhere so foreign, but you know, they were just really

1293
01:07:14,559 --> 01:07:18,479
Speaker 2: gentle with him. They've done what they're doing for so long.

1294
01:07:18,319 --> 01:07:21,159
Speaker 1: Now, they just they do it so well.

1295
01:07:21,199 --> 01:07:23,639
Speaker 2: And you know, they were general with him first, and

1296
01:07:23,679 --> 01:07:25,399
Speaker 2: then he was They were trying to encourage him to

1297
01:07:25,439 --> 01:07:29,519
Speaker 2: come to the buck once we learned how to use

1298
01:07:29,599 --> 01:07:31,599
Speaker 2: the hoist and get him into a chair and strap

1299
01:07:31,719 --> 01:07:33,279
Speaker 2: him in. They were trying to encourage him to come

1300
01:07:33,319 --> 01:07:34,999
Speaker 2: to the Starlight Room, but he was like, I want

1301
01:07:34,999 --> 01:07:40,519
Speaker 2: to wait for Charlie to come. And my parents had

1302
01:07:40,559 --> 01:07:43,359
Speaker 2: to fly back with Charlie. He started year eleven, so

1303
01:07:43,479 --> 01:07:46,999
Speaker 2: he was away from us apart from every second weekend.

1304
01:07:47,279 --> 01:07:49,079
Speaker 1: Oh wow, and that was.

1305
01:07:49,079 --> 01:07:50,799
Speaker 4: A hard How was their reunion?

1306
01:07:52,119 --> 01:07:56,159
Speaker 1: Very teary, very cheery, yoh, Charlie, Charlie.

1307
01:07:56,439 --> 01:07:58,679
Speaker 2: Yeah. I've got a photo of him next to Leo

1308
01:07:58,799 --> 01:08:01,079
Speaker 2: and you can just look on his faces.

1309
01:08:01,879 --> 01:08:04,519
Speaker 1: I've never seen that look before, but oh my god,

1310
01:08:05,279 --> 01:08:05,999
Speaker 1: he like.

1311
01:08:06,479 --> 01:08:09,959
Speaker 2: Fifteen, was having to get the train, then the light

1312
01:08:10,079 --> 01:08:13,399
Speaker 2: rail ter ran with hospital, and then he'd stay with

1313
01:08:13,479 --> 01:08:16,159
Speaker 2: us and then he'd have to go back on the

1314
01:08:16,199 --> 01:08:19,079
Speaker 2: Sunday evening. And that was the most heartbreaking bit because

1315
01:08:19,159 --> 01:08:21,839
Speaker 2: Leo would just just ball his eyes out. He cried

1316
01:08:21,879 --> 01:08:25,799
Speaker 2: more when Charlie would left than dealing with the whole

1317
01:08:25,839 --> 01:08:30,039
Speaker 2: situation that he was dealing with, Like, yes, heartbreaking, like

1318
01:08:30,439 --> 01:08:32,679
Speaker 2: seeing how upset he was when Charlie had to go,

1319
01:08:32,719 --> 01:08:35,639
Speaker 2: and you know, it was horrible having to say we'll

1320
01:08:35,679 --> 01:08:37,599
Speaker 2: see you in another fortnight type of thing.

1321
01:08:38,479 --> 01:08:42,799
Speaker 4: Yeah, you don't have to say that anymore, though, do you.

1322
01:08:42,999 --> 01:08:44,559
Speaker 1: Oh gosh, no, absolutely.

1323
01:08:44,719 --> 01:08:48,359
Speaker 2: And when we like when he was up for the

1324
01:08:48,359 --> 01:08:51,439
Speaker 2: school holidays, it was like heaven because we got to

1325
01:08:51,479 --> 01:08:53,999
Speaker 2: see him for a block of time. And then when

1326
01:08:54,039 --> 01:08:56,439
Speaker 2: we were leaving the day that we got to leave

1327
01:08:56,439 --> 01:09:01,639
Speaker 2: the Ronald McDonald house to come home, it was like

1328
01:09:01,839 --> 01:09:05,199
Speaker 2: scary because you've lived in this world. It's so detached

1329
01:09:05,239 --> 01:09:10,399
Speaker 2: from reality, and everyone's kind of going through a situation

1330
01:09:10,919 --> 01:09:14,439
Speaker 2: as well with their children, and everyone's supporting and not

1331
01:09:14,519 --> 01:09:18,599
Speaker 2: saying that people in reality art, but it was we'd

1332
01:09:18,679 --> 01:09:20,839
Speaker 2: left for a ten day holiday. I'd left the Christmas

1333
01:09:20,879 --> 01:09:22,399
Speaker 2: tree up. I had to say in the end of

1334
01:09:22,399 --> 01:09:24,759
Speaker 2: my parents packed that up. I don't want to see

1335
01:09:24,759 --> 01:09:28,119
Speaker 2: that when we come home after six months. And I

1336
01:09:28,199 --> 01:09:31,479
Speaker 2: just remember driving home and just crying a lot, and

1337
01:09:31,559 --> 01:09:35,639
Speaker 2: just being scared about what life was going to be

1338
01:09:35,839 --> 01:09:37,839
Speaker 2: like because you know, now Leo's in a wheelchair and

1339
01:09:37,879 --> 01:09:41,879
Speaker 2: he's you know, we're doing Inwitt and catheters, and it

1340
01:09:41,999 --> 01:09:43,039
Speaker 2: was just everything was different.

1341
01:09:43,039 --> 01:09:45,279
Speaker 1: He had to start a new school eventually.

1342
01:09:47,559 --> 01:09:52,039
Speaker 2: Yeah, just not have been in the house even for

1343
01:09:52,119 --> 01:09:54,799
Speaker 2: that time period of time, like you.

1344
01:09:54,759 --> 01:09:55,759
Speaker 4: Know, Leo everything.

1345
01:09:56,759 --> 01:09:58,359
Speaker 1: Leo was excited to get in the house.

1346
01:09:58,399 --> 01:10:00,639
Speaker 2: I don't know how long I spent rearranging the garage

1347
01:10:00,679 --> 01:10:03,679
Speaker 2: unnecessarily before I could even step through the front door,

1348
01:10:03,879 --> 01:10:06,239
Speaker 2: like once ago to the driveway. I was just crying,

1349
01:10:06,279 --> 01:10:08,119
Speaker 2: and you know, my parents were there and I was

1350
01:10:08,119 --> 01:10:11,359
Speaker 2: just in the garage doing stuff I did not need

1351
01:10:11,399 --> 01:10:12,039
Speaker 2: to do.

1352
01:10:11,759 --> 01:10:13,319
Speaker 1: So I just had to.

1353
01:10:13,239 --> 01:10:15,639
Speaker 2: Build the strength to go into the house for the

1354
01:10:15,719 --> 01:10:18,279
Speaker 2: past time. Then I was just like, what's happened to

1355
01:10:18,279 --> 01:10:22,919
Speaker 2: my house? But you know, obviously that's not important. But yeah,

1356
01:10:23,159 --> 01:10:27,919
Speaker 2: we're back. You know, it takes quite a while for

1357
01:10:27,999 --> 01:10:30,679
Speaker 2: it to feel a new kind of normal. And I

1358
01:10:30,719 --> 01:10:33,399
Speaker 2: remember the first time, you know, shortly after when we

1359
01:10:33,439 --> 01:10:35,359
Speaker 2: had to go back down to the hospital for a

1360
01:10:35,359 --> 01:10:37,919
Speaker 2: week and Leo said to me, I feel like they're

1361
01:10:37,919 --> 01:10:39,039
Speaker 2: going home now, doesn't it.

1362
01:10:39,079 --> 01:10:41,199
Speaker 1: And I was like, yeah, it's weird, it really does.

1363
01:10:41,239 --> 01:10:43,319
Speaker 1: It feels like Randwick's now the home.

1364
01:10:43,399 --> 01:10:47,679
Speaker 2: But even now when we go back when he used

1365
01:10:47,719 --> 01:10:51,439
Speaker 2: to go to Starlight because you know, when I was saying,

1366
01:10:51,519 --> 01:10:55,399
Speaker 2: going on a tangent going back, he was didn't want

1367
01:10:55,399 --> 01:10:58,759
Speaker 2: to go before Charlie, and then Captain Powers managed to

1368
01:10:58,759 --> 01:11:00,639
Speaker 2: convince him to go and make a birthday card for

1369
01:11:00,759 --> 01:11:04,519
Speaker 2: Charlie's sixteenth birthday and then we can bring Charlie in,

1370
01:11:04,799 --> 01:11:08,399
Speaker 2: you know, which eventually happened. But when he realized it

1371
01:11:08,479 --> 01:11:11,599
Speaker 2: was like PlayStations and the Xbox is there, and it

1372
01:11:11,639 --> 01:11:15,519
Speaker 2: was a it was more homely in the ward, like

1373
01:11:15,559 --> 01:11:16,839
Speaker 2: he had a lovely room in the ward.

1374
01:11:17,079 --> 01:11:21,679
Speaker 3: Yes, yes, yes, yes, yes, Well it's for children, isn't it.

1375
01:11:22,079 --> 01:11:25,039
Speaker 3: They understand children and they understand what children need.

1376
01:11:25,159 --> 01:11:26,279
Speaker 4: And when we were in.

1377
01:11:26,279 --> 01:11:28,999
Speaker 3: The children's hospital with Lewis, I remember it said on

1378
01:11:29,119 --> 01:11:33,919
Speaker 3: the there was a little like poster that a child

1379
01:11:33,919 --> 01:11:39,159
Speaker 3: had drawn and it said birds seeing fish swim and

1380
01:11:39,319 --> 01:11:44,279
Speaker 3: children play. Oh wow, And I always just thought of

1381
01:11:44,319 --> 01:11:46,799
Speaker 3: the simple truth of that. And then when you get

1382
01:11:46,799 --> 01:11:50,679
Speaker 3: to see your child play after not having been able

1383
01:11:50,719 --> 01:11:51,879
Speaker 3: to for so long.

1384
01:11:51,879 --> 01:11:54,599
Speaker 4: Yes, that is a thing of beauty.

1385
01:11:54,799 --> 01:11:57,759
Speaker 2: Yeah, And he would just look like he wouldn't even initially,

1386
01:11:58,399 --> 01:12:00,639
Speaker 2: and you know it's only actually been recently, like when

1387
01:12:00,679 --> 01:12:04,119
Speaker 2: we were there this week, he was the most outgoing

1388
01:12:04,759 --> 01:12:08,959
Speaker 2: I've ever seen him interactive because of his neurodivergence.

1389
01:12:08,999 --> 01:12:10,999
Speaker 1: And so if Charlie was he'd hang out with Charlie

1390
01:12:11,039 --> 01:12:11,839
Speaker 1: or he'd hang out with me.

1391
01:12:11,959 --> 01:12:13,959
Speaker 2: And you know, if other kids wanted to play a

1392
01:12:13,999 --> 01:12:16,439
Speaker 2: game with him, he would let them, but he wouldn't

1393
01:12:16,439 --> 01:12:17,919
Speaker 2: talk to them, he wouldn't look at them, but he

1394
01:12:18,679 --> 01:12:20,759
Speaker 2: could play and he wasn't being rude to them or anything.

1395
01:12:20,799 --> 01:12:21,439
Speaker 1: But it was.

1396
01:12:22,199 --> 01:12:25,399
Speaker 2: Yeah, the last few trips, I remember there was three boys,

1397
01:12:25,519 --> 01:12:29,559
Speaker 2: three or four boys, and Leah was there chatting with them,

1398
01:12:29,679 --> 01:12:31,319
Speaker 2: playing with him, and I was like, wow.

1399
01:12:31,599 --> 01:12:34,439
Speaker 1: Look at you, like you're not in confidence.

1400
01:12:34,439 --> 01:12:36,719
Speaker 2: And then this time here he was just well cheeky

1401
01:12:36,759 --> 01:12:40,879
Speaker 2: with the captains and he felt really really proud because

1402
01:12:41,359 --> 01:12:44,479
Speaker 2: he kind of went into the room and he hopped

1403
01:12:44,479 --> 01:12:48,519
Speaker 2: off half out of his wheelchair and they kind of

1404
01:12:48,559 --> 01:12:51,879
Speaker 2: celebrated him. And so then he was determined to say

1405
01:12:51,879 --> 01:12:53,639
Speaker 2: out of the wheelchair for as long as he could. Now,

1406
01:12:53,639 --> 01:12:56,559
Speaker 2: I'll let you know that he was agony, couldn't walk

1407
01:12:56,639 --> 01:12:58,879
Speaker 2: after the fact, but he wasn't letting him know that

1408
01:12:58,959 --> 01:13:02,319
Speaker 2: because they were they were so proud and happy for

1409
01:13:02,439 --> 01:13:05,239
Speaker 2: him to see such change.

1410
01:13:06,119 --> 01:13:08,359
Speaker 3: You know what that is I think that's Leo the

1411
01:13:08,439 --> 01:13:09,879
Speaker 3: lion Heart, isn't it.

1412
01:13:09,959 --> 01:13:13,479
Speaker 1: Yeah, at one hundred percent, absolutely it is. Yeah.

1413
01:13:13,639 --> 01:13:21,039
Speaker 3: Thank you so much for sharing like an extraordinary glimpse

1414
01:13:21,159 --> 01:13:24,199
Speaker 3: into a world that most people mercifully will never.

1415
01:13:24,079 --> 01:13:24,679
Speaker 4: Get to see.

1416
01:13:24,999 --> 01:13:29,239
Speaker 3: Yes, but you have, and a world in which you've prevailed.

1417
01:13:30,079 --> 01:13:32,519
Speaker 2: And I don't mean to interrupt, but one of the

1418
01:13:32,559 --> 01:13:35,919
Speaker 2: reasons that I try and share this story, you know,

1419
01:13:36,079 --> 01:13:38,919
Speaker 2: not only to promote how great Starlight is and how

1420
01:13:38,919 --> 01:13:42,239
Speaker 2: important they are, just in case there are ever any

1421
01:13:42,319 --> 01:13:46,799
Speaker 2: parents out there whose child goes through something like this,

1422
01:13:47,679 --> 01:13:50,199
Speaker 2: so that they can see that there is there is

1423
01:13:50,239 --> 01:13:52,639
Speaker 2: like a you know, there's a rainbow at the end

1424
01:13:52,679 --> 01:13:56,199
Speaker 2: of it, because when there's no answers and you just

1425
01:13:56,279 --> 01:14:01,239
Speaker 2: don't know, like you kids are so resilient, and you know,

1426
01:14:01,679 --> 01:14:05,319
Speaker 2: not to kind of give up hope.

1427
01:14:06,679 --> 01:14:09,679
Speaker 3: Michelle Burgess never expected to have to tell this story.

1428
01:14:10,599 --> 01:14:13,519
Speaker 3: What she's shared today is not just the medical reality

1429
01:14:13,559 --> 01:14:17,639
Speaker 3: of Leo's illness, but the emotional truth of what it

1430
01:14:17,719 --> 01:14:21,159
Speaker 3: means to love and care for your child when the

1431
01:14:21,199 --> 01:14:26,879
Speaker 3: future is uncertain. Leo's recovery is ongoing, and Michelle and

1432
01:14:26,959 --> 01:14:29,319
Speaker 3: her family continue to navigate that journey.

1433
01:14:29,319 --> 01:14:32,719
Speaker 4: One day at a time. Michelle spoke about.

1434
01:14:32,479 --> 01:14:35,759
Speaker 3: The comfort and support Leo received from the Starlight Foundation

1435
01:14:35,919 --> 01:14:38,639
Speaker 3: during his time in hospital, and if you'd like to

1436
01:14:38,679 --> 01:14:41,839
Speaker 3: support the work they do for seriously ill children and

1437
01:14:41,879 --> 01:14:44,639
Speaker 3: their families, you can find a donation link in the

1438
01:14:44,679 --> 01:14:45,359
Speaker 3: show notes.

1439
01:14:46,279 --> 01:14:48,519
Speaker 4: Thank you so much for listening to No Filter.

1440
01:14:49,119 --> 01:14:52,479
Speaker 3: The executive producer of No Filter is Breed Player. Audio

1441
01:14:52,479 --> 01:14:55,679
Speaker 3: production is by Jacob Brown, and video editing is by

1442
01:14:55,759 --> 01:14:59,559
Speaker 3: Josh Green. This episode was recorded at Session in Progress

1443
01:14:59,559 --> 01:15:03,399
Speaker 3: Studios and I'm your host, Kate Lanebrook.

1444
01:15:04,599 --> 01:15:05,519
Speaker 4: See you next Monday.

1445
01:15:10,039 --> 01:15:12,919
Speaker 3: Mamma Mia acknowledges the traditional owners of the land and

1446
01:15:12,999 --> 01:15:15,159
Speaker 3: waters that this podcast is recorded on