Speaker 1: You're listening to a Mother and Mere podcast.
Speaker 2: I heard him call out, I like mom, like where
Speaker 2: are you or something, and I'm like I'm right here, Darlan.
Speaker 1: And then he was like, don't you leave me?
Speaker 2: Sorry, And I was like, I'm not going to leave you, Like,
Speaker 2: I'm you can't leave me. You could have promise me
Speaker 2: don't leave me either, and I'm that was really the
Speaker 2: last thing that he said to me.
Speaker 3: Today on No Filter, we're talking about motherhood, fear, and
Speaker 3: the unimaginable moment when a child becomes critically ill. My
Speaker 3: guest is Michelle Burgess, whose nine year old son Leo,
Speaker 3: became suddenly and dangerously unwell earlier last year while their
Speaker 3: family was on a holiday. Within days, Leo lost the
Speaker 3: ability to move his body. He was transferred between hospitals
Speaker 3: in two states. He was eventually placed into an induced
Speaker 3: coma while doctors worked to understand what was happening. Leo
Speaker 3: was later diagnosed with an extremely rare autoimmune neurological condition
Speaker 3: that affects the brain and spinal cord. What followed was
Speaker 3: months in hospital, intensive treatment and the beginning of a
Speaker 3: long recovery that is still unfolding. This conversation traces the
Speaker 3: terrifying early days of Leo's illness, the uncertainty of intensive care,
Speaker 3: and the absolute heart of a warrior that's required to
Speaker 3: keep going when the future is unclear. This is Michelle Burgess, Hello,
Speaker 3: welcome to No Filter. Should I be scared, Well, you
Speaker 3: know what, there is nothing I can say or do
Speaker 3: to you. I don't imagine that would scare you more
Speaker 3: than the places that you have been with your youngest son, Leo.
Speaker 3: Would that be right, Yeah, it would be because I
Speaker 3: just have to give this some context for our listeners
Speaker 3: that when it's some ill befalls you as an adult
Speaker 3: in this world, you kind of it's hard, but you
Speaker 3: can navigate it because it's you. But when an illness
Speaker 3: or some kind of fatalistic ill befalls one of your children, yes.
Speaker 4: That is.
Speaker 3: One of the hardest crosses to bear. And I know
Speaker 3: that many of our listeners will be in situations where
Speaker 3: they have a.
Speaker 4: Child of their own or a child that they love.
Speaker 3: That has had some illness before them, yes, or some calamity,
Speaker 3: And the hearts of listeners will be with you as
Speaker 3: you take us on the journey that you've had with
Speaker 3: your youngest son, Leo, and we thank you in advance,
Speaker 3: and we acknowledge those who are listening, okay, because it's
Speaker 3: hard and what you've done is very hard and unexpected.
Speaker 3: Unexpected because of course, when you know, when you are
Speaker 3: enjoying the world as much as you can, which I
Speaker 3: believe that you were.
Speaker 4: In December twenty twenty four.
Speaker 2: Yes, yeah, we flew down to Tasmania on December twenty
Speaker 2: twenty four on New Ye's Eve because Leo wanted to
Speaker 2: have New Year's Eve at my sister's house on the
Speaker 2: northwest coast.
Speaker 1: So yeah, we flew down early in the morning.
Speaker 3: And so Leo at this point is how old he's
Speaker 3: ape right.
Speaker 4: And he's your second. You've also got Charlie.
Speaker 2: Yeah, so Charlie was fifteen at time, that's great, and
Speaker 2: Charlie was he was now he was down in Tasmania
Speaker 2: already because he was older, and Leo, with his neuro divergence,
Speaker 2: was very still, very attached to me, so there was.
Speaker 1: No way that he would go down there a lot,
Speaker 1: of course.
Speaker 2: So Charlie went down first and was with my family,
Speaker 2: and then Leo and I went down on.
Speaker 1: The thirty first, just because I had to work up
Speaker 1: until that point.
Speaker 4: So you go, you're looking forward to everything.
Speaker 1: Yes, absolutely, yeah.
Speaker 4: A glorious time, the new year.
Speaker 3: You reunited with your sister, Yeah, your beautiful boys.
Speaker 2: Yes, yeah, all my family live in Tasmania, so I
Speaker 2: get to see you all, everyone all at once.
Speaker 1: Yes, absolutely yes.
Speaker 2: And then what happened, Well, everything was okay until he
Speaker 2: became unwell on the fourth, like the evening of the fourth. However,
Speaker 2: looking back, the first kind of signs I think that
Speaker 2: were missed was the evening of the third of January.
Speaker 2: So only a few days after we arrived, and my
Speaker 2: sister and brother in law and I and Leo we
Speaker 2: went out for dinner and we kind of how is
Speaker 2: this going to go? Because he has ADHD and ASD.
Speaker 4: So situations like that are challenging for him. Yes, just anyway,
Speaker 4: but they can be navigated.
Speaker 2: Yeah, he seemed excited to go, so we thought, let's
Speaker 2: just try it.
Speaker 1: And he was fine. He just was drinking excessively.
Speaker 2: So you nor whenly go out to like country pubs
Speaker 2: and you get the jugs of water on the table. Yeah,
Speaker 2: two of those that night, Like we couldn't stop him drinking,
Speaker 2: and I was like, he's I know, that's the health
Speaker 2: risk in itself, Like that's I thought he was being silly,
Speaker 2: but I don't think he was now, I think that
Speaker 2: was something had already started happening to his body.
Speaker 1: But didn't think anything of it. And then the evening of.
Speaker 2: The fourth we like, we were staying at my sister's
Speaker 2: house and he was just chilling out on their couch
Speaker 2: watching YouTube and he's very still and quiet, and then
Speaker 2: he said, Mom, you know, can you carry me to bed?
Speaker 1: I don't feel well, which.
Speaker 2: I hadn't had to do for a long time. So
Speaker 2: I did, and I was like, well, you know, what's
Speaker 2: the matter. And he's like, you know, my I've got
Speaker 2: a headache. You know, my eyes hurt. You know, I
Speaker 2: feel really.
Speaker 1: Hot, and I had he doesn't sleep.
Speaker 2: He hadn't been sleeping very much because the sun doesn't
Speaker 2: set till about ten down in Tasmania.
Speaker 4: On the summer time.
Speaker 2: Yeah, and then he's up first thing to be with
Speaker 2: my sister's dogs. And he's always struggled to explain how
Speaker 2: he feels and where things hurt. So like, for an example,
Speaker 2: once he had a sore throat and he was telling
Speaker 2: me his neck really hurt, but it's a line of
Speaker 2: questions to find out that it was his throat that hurt.
Speaker 1: So when he said he had sore eyes, I was like, well, youah,
Speaker 1: no wonder because you're tired and they probably saw, you know.
Speaker 1: He slept all night and then woke up and we
Speaker 1: went for a swim, so I was like, oh, that's
Speaker 1: over and done with. But then when we came back,
Speaker 1: he vomited and was burning up again. So I my sister,
Speaker 1: having no kids, I was like, I need to go
Speaker 1: and get some Panda and Europan and I got like
Speaker 1: an influenza test and a COVID test and a thermometer,
Speaker 1: and like every like they came. The test came back negative,
Speaker 1: and then I did them again and they came back
Speaker 1: negative again, and he seemed kind of average, nothing different
Speaker 1: than like a virus type of thing. And the next
Speaker 1: day we stayed at.
Speaker 2: My parents' house about ten minutes away because it was
Speaker 2: a bit darker and quieter there, and but he hopped
Speaker 2: up and he was you know, watching his favorite TV shows, eating,
Speaker 2: and he seemed okay, and then he kind of crashed again.
Speaker 1: So it was weird. I was thinking, Oh, he's getting better,
Speaker 1: and then no, he was rushed again.
Speaker 2: So this went on for maybe two days, and you know,
Speaker 2: after that day, then the next day he wanted to
Speaker 2: go op shopping because he likes op shopping.
Speaker 1: And then that night.
Speaker 2: That's when I was like, something's not right, Like he
Speaker 2: was really really distraught.
Speaker 1: He he wouldn't drink for me anymore. He wouldn't let
Speaker 1: me put the I can't even think what that stuff's called.
Speaker 1: You know, when you dehydrated and you hydra light o
Speaker 1: the hydra line. He wouldn't even let me put that.
Speaker 1: And we were just in the dark the whole time.
Speaker 2: And then at one point I looked with my phone
Speaker 2: torch and I could see half of his body had
Speaker 2: this rash on it, so quickly took a photo.
Speaker 1: Then that disappeared, And in the morning, I called.
Speaker 4: The rash disappeared? Did it?
Speaker 1: Yeah?
Speaker 2: The rash disappeared right down the right side of his body,
Speaker 2: the entire right side of his body.
Speaker 1: And yeah, I called the healthline in the morning just.
Speaker 2: To see what they suggested, because I didn't want to
Speaker 2: take him to the emergency room and have him have
Speaker 2: to wait there if they were just home. And she said,
Speaker 2: we need to either get an ambulance and I'm knowing
Speaker 2: the situation there with the ambulance, it would have been
Speaker 2: quicker for me to drive him.
Speaker 1: And I was like, I want to have a bath first.
Speaker 1: This is okain, Like, I was like, oh no, we can't.
Speaker 2: We going to the hospital, and he hopped in the
Speaker 2: car and by the time we got there, he couldn't walk,
Speaker 2: and I had to get a wheelchair to bring him
Speaker 2: in to the emergency room. And I'd called my sister
Speaker 2: and she met me there and yeah, so he was
Speaker 2: just kind of passed out on the bed by the
Speaker 2: time we got there.
Speaker 3: And everybody, when you say he couldn't walk, he was
Speaker 3: too weak to walk at that point, in and out
Speaker 3: of consciousness or.
Speaker 2: Just so lethargic and weak, and yeah, he just didn't
Speaker 2: have the strength to even.
Speaker 1: Hop out of the car.
Speaker 2: So I went and got a wheelchair and brought it out,
Speaker 2: and once he was in, we didn't mate in the ear.
Speaker 1: I think they'd known of his arrival.
Speaker 2: They just rushed us out in the back and we're
Speaker 2: taking bloods and fluids and he was.
Speaker 1: So scared of needles.
Speaker 2: Anyways, the fact that he just laid there spoke volumes
Speaker 2: to me that he's something's this is odd I've got
Speaker 2: you know, I've seen my kids sick before, but this
Speaker 2: is something strangers happening here.
Speaker 3: And also you know at the hospital when they act
Speaker 3: with urgency.
Speaker 1: Yeah, it's not good.
Speaker 4: No, it's not good.
Speaker 3: And it's funny, isn't it, Because normally you'd be appreciative
Speaker 3: of it, but they vibrated a different sort of frequency.
Speaker 2: Yeah, I mean, and they everyone there was amazing that
Speaker 2: they had a They decided they needed to do a
Speaker 2: lumber punction.
Speaker 1: I'd never I didn't know what a lumber puncture was.
Speaker 1: I had no.
Speaker 2: Idea of where their thought process was going as to
Speaker 2: what might be wrong with Leo, as to why they
Speaker 2: might want to do the lumber puncture.
Speaker 1: So they gave him ketamine.
Speaker 2: So they gave him about a lot of ketamine to
Speaker 2: try and keep him still. And there were like doctors
Speaker 2: everywhere and nurses everywhere, and and Leo could still kind
Speaker 2: of talk like he's a fighter.
Speaker 1: He fought that ken of mean, he was not. He
Speaker 1: wasn't going to catch it.
Speaker 2: But they weren't successful with getting any fluid out of
Speaker 2: his spine.
Speaker 4: So what were they looking for at that point?
Speaker 1: Do you know? I know now I didn't know at
Speaker 1: the point at that time.
Speaker 2: So at that time, what I've learned is if you
Speaker 2: present to a hospital a hospital with like men in
Speaker 2: Chicockle type symptoms, they.
Speaker 4: All which was the rash and the yeah and the
Speaker 4: eye pain.
Speaker 1: They also they start to look for different autoimmune diseases.
Speaker 2: But I had no I didn't that. I just didn't
Speaker 2: even come into my mind. I just thought he had
Speaker 2: a virus and even at this point and then he'll
Speaker 2: get better, even with his eye pain. It wasn't until
Speaker 2: were in the hospital and I said, you know, the
Speaker 2: first day he was complaining about his eyes being sore,
Speaker 2: but he hasn't mentioned it since. And he goes there,
Speaker 2: Oh you know, they have been sorry. I wasn't just
Speaker 2: just he wasn't saying anything.
Speaker 3: So it was which of course is a very interesting
Speaker 3: glimpse into the mind of a child, from the mind
Speaker 3: of your boyo, because they also want to feel well, yes,
Speaker 3: and they don't want to do anything that's going to
Speaker 3: cause you alarm.
Speaker 1: Yes, that's correct.
Speaker 3: Yeah, And they don't want to do anything that might
Speaker 3: result in them going to hospital and being possibly away
Speaker 3: from you.
Speaker 2: Oh. Yes, So that was never going to be an issue.
Speaker 2: That would never have happened, that I would be away
Speaker 2: from him. He doesn't know that. And even after they
Speaker 2: weren't successful, like a few doctors tried to get the
Speaker 2: spinal fluid and they weren't successful, and they were like,
Speaker 2: you know, they said, we can't give him any more ketamene.
Speaker 2: He's had like five or six rounds of it now,
Speaker 2: and they were like, you know, he needs to just
Speaker 2: rest on his bed. He was swinging himself out of
Speaker 2: the bed, saying I'm leaving now, like I'm going, and.
Speaker 1: You know, they're like, you need to lay out. He
Speaker 1: won't be able to stand up.
Speaker 2: So but yeah, he swung himself off, kind of had
Speaker 2: to hold him up, just hold him there because he
Speaker 2: wasn't staying on that bed. He was determined he didn't
Speaker 2: want feed in that hospital at that point in time.
Speaker 3: And how are you at this point You're obviously just
Speaker 3: in the moment of trying to keep Leo calm and
Speaker 3: try and reassure him. Yes, but at this point you
Speaker 3: must have some escalating fear.
Speaker 2: I did.
Speaker 1: I I just didn't know what was happening.
Speaker 2: I'd never seen either of my children like this before.
Speaker 2: And the worry of the people there, but I still
Speaker 2: had this idea in my mind that he just got
Speaker 2: some virus and into given maybe any biotics or something,
Speaker 2: and then you know, in a few days he'll be better.
Speaker 1: You know.
Speaker 2: We were due to fly home, I think in a
Speaker 2: few days later, and I kept saying to the medical staff, Oh,
Speaker 2: should I cancel our flight or we'll be out of
Speaker 2: here but we and they're like, oh, we don't want
Speaker 2: to say yes or no, And I said I'll just
Speaker 2: keep it.
Speaker 1: But then one doctor who I always.
Speaker 2: Remember him, one doctor came in and when I asked,
Speaker 2: he was like, absolutely, you're not making that flight. He's like,
Speaker 2: he has to at least have been below the fort
Speaker 2: forty degrees fever for a few days before you can
Speaker 2: even think about leaving this.
Speaker 1: So I was like, okay, I've been told, now I'll
Speaker 1: cancel my flight.
Speaker 2: So yeah, that was that was when that's still not
Speaker 2: quite any concept of how long we would be there.
Speaker 2: Like at that point they said after the failed lumber
Speaker 2: puncture that they were we needed to stay a night
Speaker 2: and he'd go on to general and aesthetic the next
Speaker 2: day and we'd have an anetheesist come and and do
Speaker 2: the procedure.
Speaker 1: So yeah, I thought maybe one or two nights wo'd
Speaker 1: be there, so.
Speaker 3: You at this point are still hoping that you might
Speaker 3: make your flight home.
Speaker 4: Instead, what happened.
Speaker 2: Well, he just deteriorated very quickly at that hospital, I mean,
Speaker 2: and there was nothing to do with the treatment. It
Speaker 2: was just his condition. And they'd come into the room
Speaker 2: and they'd do all these tests like can you feel
Speaker 2: this on your legs? And you know, they'd shine the
Speaker 2: light in his eyes and something I got used to
Speaker 2: after many many months of it happening, and you know.
Speaker 1: Testing for strength.
Speaker 2: Then probably he said to me at one point when
Speaker 2: he needed to use the bathroom, like, I can't we
Speaker 2: properly because if you've got boys.
Speaker 4: Yes, I've got three boys.
Speaker 2: I've got three, so you know when they we they
Speaker 2: think it's fun to start and stuff and start and stop.
Speaker 4: So that's what.
Speaker 2: He was kind of doing. And I was thinking, oh,
Speaker 2: he's it's just a thing. I could hear him in
Speaker 2: the toilet do it. And then he said to me,
Speaker 2: I can't, like, I can't do we properly, and you know,
Speaker 2: so I try the water. And after about maybe two
Speaker 2: or three times that happening, I was like, maybe something's
Speaker 2: not right, so I told the nurse.
Speaker 1: She noted it.
Speaker 2: They were like, well, put the shower on. They were
Speaker 2: offering all these ideas, play this, blah blah blah. But
Speaker 2: he started to get he was getting sick up basically,
Speaker 2: and getting quite anxious about it. So I don't think
Speaker 2: either of us has slept very much at this point,
Speaker 2: and he wanted me in the little hospital bed with him.
Speaker 1: They're exhausting days, so exhausting.
Speaker 2: Yes, it's another level of tired, which just continued. Yeah,
Speaker 2: but at that point we were getting up every ten
Speaker 2: fifteen minutes because he would say, I need to go now,
Speaker 2: and so we'd kind of go into the bathroom. We
Speaker 2: had our own little room there, and we'd go into
Speaker 2: the bathroom and he'd try and then he'd stand there
Speaker 2: and then he'd sit down, and then he'd apologize to
Speaker 2: me and say, I'm so sorry, Mom, I can't go,
Speaker 2: and I'm like, you don't need to be you don't
Speaker 2: need to be sorry. It's like, it's okay. And they'd
Speaker 2: said if you can't, if you couldn't pass your EYND,
Speaker 2: they were going to try enemies. Maybe he was constipated,
Speaker 2: and then if that didn't work, they would insert a catheter,
Speaker 2: and so I think that's why I was encouraging him
Speaker 2: a lot to try and go, because I couldn't picture
Speaker 2: how he was going to cope having a catheter inserted,
Speaker 2: knowing how sensitive.
Speaker 1: That he is. But yeah, he got to that point.
Speaker 4: After the break.
Speaker 3: Michelle recalls the moment when Leo's condition rapidly declined and
Speaker 3: what happened after. So you're on this downhill descent now,
Speaker 3: whereas only a few days earlier you were celebrating with
Speaker 3: your family. Yes, and your boy, even though he had
Speaker 3: his challenges, was a normal eight year old boy.
Speaker 2: Yeah, all of life, having fun, and you know, he
Speaker 2: was running around. He loves my sister's dog, so he
Speaker 2: was always like running around with them. That he was
Speaker 2: getting up early in the morning to go out the
Speaker 2: dog flat door at the top of the stairs, go
Speaker 2: down down.
Speaker 1: Way with them. Like, Yeah, he was always on the go.
Speaker 2: And you know this, he'd look forward to this trip
Speaker 2: for such a long time because he had had a
Speaker 2: difficult year at school, which was the first he'd had
Speaker 2: a really difficult year at school, and this was you know,
Speaker 2: he was really excited for this trip.
Speaker 1: So it was.
Speaker 2: He was it was hard because I thought, you know,
Speaker 2: he only had a few days and you know now
Speaker 2: he hasn't really got to enjoy yet. But yeah, that
Speaker 2: kind of going back to that night when he was
Speaker 2: still trying to to go oilet, Yeah, because I've been
Speaker 2: getting up so much and you know, i'd get in there.
Speaker 2: At one point I heard him get up and he
Speaker 2: was on the side closest to the toilet door. And
Speaker 2: I still, even though I know and I've read the
Speaker 2: medical reports, I still kind of have this guilt that
Speaker 2: I should have been quicker almost because I was like
Speaker 2: so tired, so kind of you know, you get yourself
Speaker 2: out of bed. And by the time I kind of
Speaker 2: stood up the door, he was in the bathroom and
Speaker 2: the door was closed, and then I just heard this
Speaker 2: the biggest like smashed against the door, and I just
Speaker 2: screamed because I knew he hit his head on the
Speaker 2: door collapsed, Yeah, and I just screamed for the nurses.
Speaker 2: I can't remember if there was a button or something.
Speaker 2: I mean, they had to a bank, so just remember
Speaker 2: they rushed in and like when we opened the door,
Speaker 2: he was just kind of there on the ground and
Speaker 2: he wasn't even responsive to it. Like it was like
Speaker 2: nothing had happened. But this this was seriously so loud.
Speaker 2: So he hid his head with such force and I
Speaker 2: just thought.
Speaker 4: He was unconscious.
Speaker 1: No, he wasn't, or had he passed?
Speaker 4: Had he passed out?
Speaker 5: When he he may collapsed or yeah he made and
Speaker 5: he had No he didn't even know that it had
Speaker 5: happened because when the nurses were there asking, you know,
Speaker 5: doing their valuation type of thing, it was as if
Speaker 5: nothing had happened.
Speaker 2: Now that I'm never going over how loud that was,
Speaker 2: like that would have really really hurt. And you know,
Speaker 2: then he still couldn't do anything. So that's when they suggested, like,
Speaker 2: we'll get the chair and he can sit in the shower.
Speaker 2: Maybe that will help. And that was the first time
Speaker 2: he started. He said to me, where are my swords? Mum?
Speaker 1: And I was thinking because he hit.
Speaker 2: His head, and I was like, oh, wish, he's my
Speaker 2: three swords. Where are my three swords gone? And you know,
Speaker 2: he went to worry. So I was like, I'm not sure,
Speaker 2: like you know, I don't know. And then he was like,
Speaker 2: what's that stuff moving around the room and and there's
Speaker 2: stuff crawling on your pajamas?
Speaker 1: What are they?
Speaker 2: And I I was blaming myself because I wasn't quick enough,
Speaker 2: and so I thought it was because his head.
Speaker 1: Now this was happening, But yeah.
Speaker 3: How are the nurses then, when he was saying things
Speaker 3: like that, did that Were they attributing it to the
Speaker 3: knock on the head or that he'd been a bit
Speaker 3: delirious or was that a warning sort of flag for
Speaker 3: them as well?
Speaker 2: Yeah, I think it was a warning for them, but
Speaker 2: they also had to consider that it might have been
Speaker 2: the knock on his head. And I only know this
Speaker 2: because of like I've had a look at the medical records.
Speaker 4: Yes, and that's the only reason at the time.
Speaker 3: At the time, it's very hard to convey to people
Speaker 3: how very much in the moment you are and operating
Speaker 3: with such limited information. Yes, you know, you're kind of
Speaker 3: scanning for clues. You're trying to hear conversations that nurses
Speaker 3: or doctors are having outside of your earshot. You're trying
Speaker 3: to read them when they come in.
Speaker 2: Absolutely, and I am big on that, Like I feel
Speaker 2: like I can always pick up on what's happening.
Speaker 1: But clearly I was off my guard at that point.
Speaker 2: And they can't remember kind of what happened in between that.
Speaker 2: But I remember when we were back in the bed
Speaker 2: and a nurse came in because they hadn't seen that.
Speaker 1: That was just Leo and I in the shower at
Speaker 1: that point, and then when they came in.
Speaker 2: I mentioned it to them and then at an escalator
Speaker 2: because he was saying to the nurse, why do you
Speaker 2: have a drone in your uniform? Like why is there
Speaker 2: poke balls floating around outside the room? And so they
Speaker 2: witnessed that, which is great because I think it is
Speaker 2: a it is a symptom of auto in diseasis as well,
Speaker 2: which I found out many months later.
Speaker 3: Right, And also sometimes I think as the mother in
Speaker 3: this instance, when you're relaying things, sometimes it's dismissed as
Speaker 3: you being hyper vigilant or you know, over obviously overcautious
Speaker 3: or whatever. But for them to witness it, yes, they twigged.
Speaker 3: Then did they that it had more significance?
Speaker 2: Yeah, So that's when that's when more tests and more
Speaker 2: doctors started to come in. And this is a regional hospital,
Speaker 2: so they were limited with what they could do. I mean,
Speaker 2: like I said, the stuff, they were brilliant, but they
Speaker 2: had limited resources. They took him to maybe CT scanner.
Speaker 2: I think they had there. So they did that on
Speaker 2: his brain to see if there had been any injuries
Speaker 2: or anything like that, but nothing was picked up. And
Speaker 2: then they had got to the point where they had
Speaker 2: to insert the catheter and they gave him I think
Speaker 2: it was medazlan the medication, and it took the doctor.
Speaker 2: There was two nurses kind of holding him down, and
Speaker 2: then I was there just kind of trying to relax him,
Speaker 2: and I saw his eyes flicking into the back of
Speaker 2: his head and I thought, Oh, that's the medication doing
Speaker 2: that perhaps, like that's that's what that is. He was
Speaker 2: still putting up in hell of a fight for tiny thing.
Speaker 2: There was nothing of him. He was not He was said,
Speaker 2: don't you which is good, you know, don't you touch me.
Speaker 1: That's my privates. Don't you do whatever. I'm just trying
Speaker 1: to bite them and stuff like that. And I'm like,
Speaker 1: we'll watch out, like get you. And they once they
Speaker 1: got the catheter in.
Speaker 2: You know, I know a lot about bladders now for
Speaker 2: eight nine years old and know a lot about them.
Speaker 2: So he was only meant to at that point, I
Speaker 2: think be able to hold about two hundred and fifty
Speaker 2: three hundred and fifty meals of year.
Speaker 1: Ie.
Speaker 2: When they got the Catherine and drained it, there was
Speaker 2: over a leader in there, which is.
Speaker 3: Like because he hadn't because he hadn't been able to
Speaker 3: urinate for so long.
Speaker 2: Yes, yes, so that was just kind of the first
Speaker 2: thing that was shutting down for him, and things started
Speaker 2: to move quite quickly at that point. They were like,
Speaker 2: we need to chop you down to Hobart. I think
Speaker 2: around that same time his legs had stopped work as well,
Speaker 2: and yeah, that was like just raising alarms.
Speaker 1: So they still I'd never heard of auto immune deities.
Speaker 2: Still at this point, I had no idea what was
Speaker 2: wrong with him or what even might have.
Speaker 3: Been had they proffered any any theories at this point,
Speaker 3: or they were still just trying to arrest the symptoms
Speaker 3: and work out what was going on.
Speaker 2: Yeah, No, they hadn't suggested anything more than it could
Speaker 2: be like a Bencher coocle type of thing. But they
Speaker 2: were you know, you've got to give him permission to
Speaker 2: treat him for whatever they think it might be without
Speaker 2: having a diagnosis, just in case it is that until
Speaker 2: they get a diagnosis.
Speaker 1: And I was like, yes, like please do, Like I'm
Speaker 1: not going to say.
Speaker 4: No, so then you get choppered to Hobart.
Speaker 2: Unfortunately not so up until that point, they'd been lovely
Speaker 2: weather down there, and then there was a storm that
Speaker 2: hit that morning, I think in Hobart, so they couldn't
Speaker 2: choper us. So then they had to organize a like
Speaker 2: ambulance transfer. So it was it was a long transfer,
Speaker 2: but they had to like there's a shortage of ambulances
Speaker 2: there as well, like it's a known kind of a
Speaker 2: known thing down there, and they all have their areas,
Speaker 2: so it wasn't just one ambulance that took us down there.
Speaker 1: We'd have to get hot ving. So it was it
Speaker 1: was probably twelve hours.
Speaker 2: Later by this point, and he looked he was really
Speaker 2: bad that I remember a nurse taking him out of
Speaker 2: the room and it was the first She's like, oh,
Speaker 2: you know, we can't believe you just sat in a
Speaker 2: dark room the whole time.
Speaker 1: And in my head I was thinking what else would
Speaker 1: I be doing?
Speaker 2: Like, where else would I be Like it wasn't even
Speaker 2: a I didn't even think that it was a strange
Speaker 2: thing to be doing. Just just sat in the darkness
Speaker 2: quite so long, and I was like, he's not going
Speaker 2: He's going to be Okay, isn't he like he's not
Speaker 2: going to I'm not going to lose him, Like I
Speaker 2: just remember saying to her like I can't live without him.
Speaker 2: I couldn't agine, like I'm not going to be to
Speaker 2: live without him, And and you know she couldn't. She
Speaker 2: was lovely, but you couldn't say, and did.
Speaker 4: She answer you?
Speaker 3: Because they're careful with what they say. Yeah, and then
Speaker 3: you notice that they're being careful with what they say.
Speaker 2: Yeah, so yeah, I think it was something along that
Speaker 2: they don't have any answers, but you know, I know
Speaker 2: she's being positive. I just remember her being positive for me.
Speaker 2: And it was late that night, so it would have
Speaker 2: been about twelve hours.
Speaker 1: So I've got I've got a photo of.
Speaker 2: Him like getting stretched out and at that point hand
Speaker 2: was it his right hand? Alligan moved was his right
Speaker 2: hand by that stage, So within that twelve hours, Yeah,
Speaker 2: his whole body was paralyzed.
Speaker 1: Apart from this hand.
Speaker 2: And they had he was in this stretch with seat
Speaker 2: belts kind of like straps all over him to keep
Speaker 2: him in. And yeah, that's when we first got into
Speaker 2: the ambula and I had to drive thoughts seemed like
Speaker 2: ages and then we have to get out and swap
Speaker 2: the ambulance and this is you know over.
Speaker 4: Wow, how many times did you have to swap?
Speaker 2: So we swapped, so we were in four different ambulances,
Speaker 2: so we had to swap three times.
Speaker 4: Oh my goodness.
Speaker 1: Yeah, so we had to go into one place.
Speaker 2: And I can just remember marrying these hot tech, like
Speaker 2: high tech ambulances and I'm sitting in and I'm exhausted,
Speaker 2: and I'm trying not like you know, trying not to
Speaker 2: see what I could see. Leo was also tired because
Speaker 2: he shut his eyes and then his eyes ald dart
Speaker 2: into his head and then he'd be awake again. And
Speaker 2: like he that entire trip I would have been six
Speaker 2: seven hours just because of the transfers like that that
Speaker 2: slowed it down.
Speaker 3: Is he capable of communicating with you at this point
Speaker 3: or just the right hand?
Speaker 2: That's is he He could use the right hand, but
Speaker 2: at this when he was just pretty much constantly hallucinating,
Speaker 2: so he was he was. I can just remember like
Speaker 2: I was sitting let's see here, and he was like
Speaker 2: laying there facing me, and he had like a clip
Speaker 2: on his finger, like a blood pressure thing, and even
Speaker 2: thinking it was like a McDonald's chicken nugget or something.
Speaker 2: And then so he's talking like he was in a
Speaker 2: drive through. I'll have like a happy meal with three
Speaker 2: chicken nuggets or something, lad. And then he was talking
Speaker 2: to my sister's dogs so I could hear their names.
Speaker 2: And then every now and then he would get some
Speaker 2: kind of control and he'd look at me and he'd
Speaker 2: be like Mum, and I'm like, you know, I'm so here, sweetie.
Speaker 1: But yeah, by the time the last.
Speaker 2: Transfer before we were taking to the Hobart hospital, he
Speaker 2: freaked out kind of like I could hear him because
Speaker 2: he went out in the stretch and then I'd go
Speaker 2: out the side door and then I'd go round to
Speaker 2: him and I heard him call out like mom, like
Speaker 2: where are you or something and I'm and I'm like
Speaker 2: I'm right here, darling. And then he was like, don't
Speaker 2: you leave me? Sorry, And I.
Speaker 1: Was like, I'm not going to leave you, like I'm
Speaker 1: she can't leave me.
Speaker 6: You would have promise me don't leave me either, and
Speaker 6: I'm That was really the last thing that he said
Speaker 6: to me, because by the time we got too into
Speaker 6: the into the whole art look into the ICU.
Speaker 1: That was probably like the where reality really hit.
Speaker 2: Like there's all of a sudden, all adoptors were there
Speaker 2: and the beachs and this, and they were like chitty chatting. Yeah,
Speaker 2: and his eyes were still just like really flickering, but
Speaker 2: every now and then they'd look at me, so knew that.
Speaker 2: So I was like, you know, I felt at that
Speaker 2: point like I'm so tired.
Speaker 1: I felt like I wanted to vomit or part us out.
Speaker 1: And I was like, I I need him to be
Speaker 1: able to see me if if he looks at me.
Speaker 2: And then everyone was not there all of a sudden,
Speaker 2: and there was a nurse in the like this little
Speaker 2: waiting area, and then his mouth started to do this
Speaker 2: thing where it just like started to like jut open
Speaker 2: and it was scaring me.
Speaker 1: I was like, yeah, like can you come and see this?
Speaker 2: And so it was like wide open and like the
Speaker 2: eyes like flickering and like a spasm. Yeah yeah, and
Speaker 2: they and she said, can you get some videos of
Speaker 2: it just in case. So I've got these horrible videos
Speaker 2: that I've never deleted, which is good for research purposes,
Speaker 2: I found out since, but yeah, these horrible videos that
Speaker 2: show how quickly even more so that he declined within
Speaker 2: maybe an hour of being there. Yeah, that by that
Speaker 2: point his jaw was locked shut. He couldn't make eye
Speaker 2: contact in his eye. We're just kind of just like this,
Speaker 2: just backing his head the whole the whole time. Dad
Speaker 2: put tubes off his nose at this point. I don't
Speaker 2: remember when that happened, but I just thought at that point, like,
Speaker 2: I can't see him like this. What's I just I
Speaker 2: don't know what's happening. But I don't know if I'm
Speaker 2: how I don't know if he's going to survive at
Speaker 2: this point.
Speaker 4: At this point, you're.
Speaker 3: So you've already been in the hospital, the regional hospital.
Speaker 4: Now you're at Hobart.
Speaker 3: Yes, things have really taken a terrifying descent. Yes, yes,
Speaker 3: are you talking to your mother? Are your sister and
Speaker 3: Charlie back at their place? Who who's talking you through this?
Speaker 3: Who's your counsel, who's comforting you, who's offering advice, who's
Speaker 3: advocating for you?
Speaker 2: Well, my sister was always there, and she only lived
Speaker 2: a few minutes down the road from the hospital, so
Speaker 2: if I needed anything, she would kind of come over
Speaker 2: and chaut and like Charlie was there, but he was
Speaker 2: as fifteen at the time, he wanted to go and
Speaker 2: do fun stuff because it was the holidays. I don't yes, yes,
Speaker 2: couldn't comprehend it. This was serious, I don't think at
Speaker 2: that point.
Speaker 3: Yes, he hadn't seen Leo at his worst then.
Speaker 2: No, so he'd seen him when he first went into hospital,
Speaker 2: and Leo had asked for him, but he was bored.
Speaker 2: So he go and hang out with my brother like
Speaker 2: him his uncle, so which I get. And maybe it
Speaker 2: was like a way to protect himself as well.
Speaker 4: Of course.
Speaker 3: Yeah, I have to tell you, Michelle, as you're sharing
Speaker 3: this with me, my eldest son was diagnosed with lukemia
Speaker 3: when he was six.
Speaker 1: Oh, my gosh.
Speaker 3: And so a lot of what you're saying to me
Speaker 3: I'm very familiar with. Yes, yes, just when you're hoping
Speaker 3: that it's one thing and then it descends into something else,
Speaker 3: and then you're reading the faces, the horror on the
Speaker 3: faces of the doctor, and then you're taken into the
Speaker 3: room with the tissues.
Speaker 4: And so I am.
Speaker 3: Really very much going on this this.
Speaker 4: Cruel journey with you.
Speaker 1: How old is he now?
Speaker 4: Now he's twenty two.
Speaker 1: Oh, that's awesome.
Speaker 4: So you were.
Speaker 3: At this point though, watching your boy disappear from you
Speaker 3: effectively and go into I guess some other world.
Speaker 2: Yeah, I just because I could see that he was
Speaker 2: still prior to everything shutting down, I could still see
Speaker 2: he was fighting, like trying to see me and.
Speaker 4: So stay, trying to stay.
Speaker 2: He really really was, and so he knew he was
Speaker 2: still there, and it was I don't know the time frame.
Speaker 2: They were like, this isn't a nice way to see anyone.
Speaker 2: We need to go, and they took him down to
Speaker 2: do a full brain and spine MRI and then they
Speaker 2: said we're going to put him in an induced coma,
Speaker 2: which I was it was this strange. I was so
Speaker 2: happy to know that because I didn't want him to
Speaker 2: be scared like that was the thing. I just say,
Speaker 2: I don't want him to just be trapped like that
Speaker 2: and be so scared. I would rather him not be
Speaker 2: aware of kind of what was happening. And that's kind
Speaker 2: of when my family started to come down, because I
Speaker 2: was like, oh, you know, what time should we come down,
Speaker 2: like the next day or something, and I was like yeah,
Speaker 2: So they kind of all packed up and rented accommodation
Speaker 2: down in Hoguard and where was Leo's dad in the
Speaker 2: in the equation at this point, so he was still
Speaker 2: there on the northwest coast and near South Wales, right
Speaker 2: and I wrung him a few times and I was
Speaker 2: like leaving a message up It's really important that you
Speaker 2: pick up the phone now, like you really need to
Speaker 2: pick the phone up.
Speaker 1: And I think at at.
Speaker 2: Some point in the first day of vioving in Hobart,
Speaker 2: I said you need to come down to test Mania,
Speaker 2: like you need to come down here, and he did, so, Yeah,
Speaker 2: he flew down I think the day afterwards. Leo every
Speaker 2: a few days and he had to be able to
Speaker 2: get a flight, So yeah, he flew down.
Speaker 3: And so when he saw Leo, Leo was in the
Speaker 3: induced coma.
Speaker 2: Yeah, you pretty much couldn't touch any part of Leo
Speaker 2: by that point he was, so they.
Speaker 1: Discovered so he's when we got there. They were doing
Speaker 1: something with his stomach.
Speaker 2: They had the nutric in in and they were seeing
Speaker 2: which I didn't know.
Speaker 1: They were testing to see if his stomach was digesting.
Speaker 2: And they'd put a certain amount in and then they'd
Speaker 2: aspirated out and they'd measure after a few hours how
Speaker 2: much it digested. And I was like coming out black
Speaker 2: and I was like, oh, it's because the last thing
Speaker 2: he ate was chocolate brownies, because you know he likes
Speaker 2: chocolate brownies.
Speaker 1: He made them with my sister and they're like, oh,
Speaker 1: that's blood.
Speaker 2: And I was I didn't quite but I just didn't
Speaker 2: quite believe.
Speaker 1: I was like, what's chocolate brownie?
Speaker 3: Is?
Speaker 1: Like, how can that be blood? It's like the last
Speaker 1: thing he ate.
Speaker 2: And it turns out that his stomach had just shut down,
Speaker 2: so that wasn't digesting. So you know, he had the
Speaker 2: one of the nasal tubes into his stomach and then
Speaker 2: they had to put another one below his stomach so
Speaker 2: his body would get the nutrition. And I liked how
Speaker 2: they explained it to me. They said, we're not going
Speaker 2: to take the other one out in his stomach. We're
Speaker 2: going to leave it there and we're going to keep
Speaker 2: putting little bits of the nutricent in. And it's like
Speaker 2: we're knocking on the door. I was saying, hello, don't forget,
Speaker 2: like you know, uh, you know, just trying to wake
Speaker 2: the stomach up.
Speaker 4: Your right, what your job is?
Speaker 2: Yeah, yeah, the stomach. Yeah, So they didn't want to
Speaker 2: not kind of do that.
Speaker 3: Next Michelle takes herself back to the time Leo spent
Speaker 3: several weeks in an induced coma. So Leo is then
Speaker 3: they put him in an induced coma? Yes, And have
Speaker 3: they said to you how long they expect that is
Speaker 3: going to be?
Speaker 1: If they did, I don't recall, but I don't believe
Speaker 1: they did.
Speaker 3: You would have remembered if they had said to you,
Speaker 3: because how long did he end up being in a coma?
Speaker 2: Quite a few weeks, I think, yeah, Like if my
Speaker 2: just trying to think the time frame, like after he'd
Speaker 2: come back from the MRI, like I got to give
Speaker 2: him a kiss and stuff down there, and then when
Speaker 2: he came back, like he was incubated.
Speaker 1: He had the both of the names or I don't
Speaker 1: think they're called the nasal tubes.
Speaker 2: He had had towers down each side of him with
Speaker 2: you know, just needles cut like all in his legs everywhere.
Speaker 2: There wasn't a lot of area that I could touch
Speaker 2: him touch, yeah, not even to kind of to touch him.
Speaker 2: So and I was a bit scared too, And it
Speaker 2: was the nurses. It said to me, he's still your son,
Speaker 2: like you can, you know, go and talk to him,
Speaker 2: like touch his hair.
Speaker 1: I didn't want to heard him whisper to him, Yeah,
Speaker 1: and I did. They were great there.
Speaker 2: They would say, you know, brush his teeth and they
Speaker 2: have this special toothbrush and then the shower cap thing
Speaker 2: that warmed up, and I think they could see that
Speaker 2: I was in shock at that point, so they were
Speaker 2: really trying to involve me and still being by him,
Speaker 2: so I wasn't in the distance looking.
Speaker 3: And then when you when he was in the coma.
Speaker 3: So for those weeks, as well as keeping him sedated
Speaker 3: and trying to stabilize him, they're obviously running just a
Speaker 3: battery of tests, I imagine.
Speaker 2: Yeah, So I found out there's a thing called an
Speaker 2: infectious disease team, So.
Speaker 1: They were there every day.
Speaker 2: They came in and they'd ask me questions like has
Speaker 2: he touched a horse?
Speaker 1: Has there been a rat? Has there been this? And
Speaker 1: my mind's like.
Speaker 2: Clicking my oh, well, yeah he did that. And there
Speaker 2: was a pony and he touched that and I'm thinking,
Speaker 2: is that it? But everything, And they said to me,
Speaker 2: at at some point they're in Hobart, we've got different
Speaker 2: levels of tests that we've run and everything's come back negative,
Speaker 2: and we're like on level five now, like and we're
Speaker 2: not going to stop, but everything is coming back negative.
Speaker 2: And I'm not sure how many lumber punctures I'd done
Speaker 2: by this point, like in total, I think he had
Speaker 2: six or seven. And that was when a neurologist first
Speaker 2: came and started to talk about immune and yeah, that
Speaker 2: he thought it was a He had a name Adam
Speaker 2: I think one of the ones was that he thought
Speaker 2: it might be and Moggret, I think was the other one.
Speaker 2: He was trying to explain it to me, and like
Speaker 2: he was like the smartest person I think I've ever met,
Speaker 2: just hearing how he was talking and how he's trying
Speaker 2: to simplify, you know, the description of everything. But at
Speaker 2: the same time he was so caring as well and
Speaker 2: in compassionate, and all the team there, like I I
Speaker 2: just remember.
Speaker 1: How supportive that they all were.
Speaker 2: And we'd go off into the like a little family room,
Speaker 2: and the doctor, the main doctor there, would sit there
Speaker 2: and he was very honest, which I appreciate. He would
Speaker 2: be like, you know, we don't know what's happening. At
Speaker 2: this point, he's very vulnerable. There's no guarantee if he's
Speaker 2: going to recover. If he does, it's it's not weeks
Speaker 2: or anything that they said, Look, it's good months or years,
Speaker 2: and I I was a little bit annoyed inside. I
Speaker 2: just remember thinking and saying to them, well, he will recover,
Speaker 2: like you don't know, Leo, like he will recover and
Speaker 2: I've had all the time in the world. And He's like,
Speaker 2: that's good then, and I was like, that's right, that's
Speaker 2: what's happening.
Speaker 1: Yeah, he will and that's yeah.
Speaker 3: What were you thinking yourself at that point, like what
Speaker 3: was the hardest moment? What were you seeing for yourself
Speaker 3: in the future and for Leo.
Speaker 2: I mean I did say that, but in honesty, I
Speaker 2: did think I was going to lose him because his
Speaker 2: lungs were collapsing and you know, then they'd have to
Speaker 2: roll him over onto his stomach. It just seemed like
Speaker 2: everything was just getting worse, and I think it was
Speaker 2: kind of getting any better. There was talk of being
Speaker 2: transferred over to Westmead, but they said that could be
Speaker 2: in a few weeks. Like you know, I don't know.
Speaker 2: I know how they'll do like iv IG and different
Speaker 2: types of things.
Speaker 4: What's iv IG.
Speaker 1: Well, I learned these things, said I didn't know either.
Speaker 2: It's a plasma infusion, which right, but the amount is
Speaker 2: I think it needs three to five thousand plasma donations
Speaker 2: per per dose. So there's they get approved, patients get
Speaker 2: approved for two doses, and anything more you need government
Speaker 2: approval just because of how expensive it is and how
Speaker 2: much plasma they need to make these doses of the
Speaker 2: iv ig.
Speaker 1: So he kind of had that.
Speaker 4: As it transpired.
Speaker 3: You did end up then getting transferred to Sydney.
Speaker 2: Yeah, so his lungs had collapsed at some point and
Speaker 2: then they flipped him over and then they were okay,
Speaker 2: and then the night they said another doctor had flown
Speaker 2: in and his lungs collapsed again, and that at that point,
Speaker 2: Like I remember, really my favorite times of the night
Speaker 2: or day were like two or three, So everything was quiet,
Speaker 2: and I'd hop up and I'd have like relaxing music
Speaker 2: on for him, and I'd get like nice smells and
Speaker 2: I'd try and rub oil, like.
Speaker 1: His legs are so swollen, so I was just trying
Speaker 1: to think.
Speaker 2: I was trying to move him anything I could, because
Speaker 2: I thought, you know, when he wakes up, if he
Speaker 2: hasn't moved, these here going to be sore.
Speaker 1: So I was just trying to move things.
Speaker 2: And and then when i'd kind of maybe get to
Speaker 2: sleep because it was like a pull out bed next
Speaker 2: to him.
Speaker 1: I'd put a pillow over my head and i'd get it.
Speaker 2: I don't know, I hardly slept it all, but I
Speaker 2: remember every time that I woke up and I heard
Speaker 2: the beeps, I'd just start to cry. And I didn't
Speaker 2: want to take the pillow off my face because I
Speaker 2: didn't want I didn't want it to be real.
Speaker 4: I didn't want to be where you were, what you
Speaker 4: were looking at.
Speaker 1: And just hearing it.
Speaker 2: So I just just remember laying there crying with this
Speaker 2: pillow over my face before I was brave enough to
Speaker 2: take it off and go back into the reality.
Speaker 1: But yeah, that the night when his lungs collapsed the
Speaker 1: last time that that was it.
Speaker 2: I thought I've lost him, and I threatened nurses because
Speaker 2: Hobart Hospital is quite high.
Speaker 1: They've got a beautiful, beautiful location there.
Speaker 2: It's a nice new hospital for the kids, and I
Speaker 2: just said, like, if he dies, I'm jumping off the roof,
Speaker 2: like I can't live without him, you know, even thinking
Speaker 2: that Charlie would be okay, like you know, because he's
Speaker 2: got my he'll be all right, Like he's got my
Speaker 2: sister and stuff, which is just a horrible thought, but clearly.
Speaker 1: You're not thinking rationally.
Speaker 2: I was just like walking around the corridors is back
Speaker 2: and forth, back and forth, back and forth. I don't
Speaker 2: know how many times, because I just I didn't know
Speaker 2: what to do. And that was here now, like where
Speaker 2: the raw flowing doctors are coming in the morning and
Speaker 2: transferring you to to Westmeat.
Speaker 1: So that was with his clatch lung and all.
Speaker 2: So they're like, we needed they needed to do something
Speaker 2: called plasmaphoresis, and there was someone at Hobart Hospital that
Speaker 2: could do it, but they.
Speaker 1: Were they'd never done it on someone as young as Leo.
Speaker 1: So I don't blame them.
Speaker 2: I wouldn't want to be putting that situation where that's
Speaker 2: where I have to learn how to do it.
Speaker 1: So they're like, on the main end, you've got to
Speaker 1: go there.
Speaker 3: And also at this point you must have been like,
Speaker 3: if we have a chance, we have to get to
Speaker 3: a bigger hospital with more resources and more access to
Speaker 3: overseas technologies. You must have at this point gone, we
Speaker 3: really need the cavalry.
Speaker 1: Yeah, one hundred percent.
Speaker 2: As scared as I was, because I had, like all
Speaker 2: my family, they have my parents, my sisters, brothers, aunts
Speaker 2: in laws. I was so I had kind of their support,
Speaker 2: but I thought, this isn't about me. Leo's not getting
Speaker 2: any better, Like he's not getting better, He's there's not
Speaker 2: much more before the point he's gone. So yeah, it
Speaker 2: was it just has to be done. And so they
Speaker 2: probe the row flowing doctors have got a like a
Speaker 2: jet and that I can't remember what time it was,
Speaker 2: but I remember as they were it was it's a
Speaker 2: huge thing. I don't know if you've ever seen the
Speaker 2: transfer a patient connected to everything from the bed onto
Speaker 2: the stretcher. It's so methodical. I've got it's it's a long,
Speaker 2: long process. And I just remember my dad saying to me,
Speaker 2: whatever happens, it's going to be okay. And now I
Speaker 2: think I think he was thinking if it doesn't, I've
Speaker 2: lost my grandchild and my daughter. And I I was
Speaker 2: just thinking, yeah, maybe it's not going to be but
Speaker 2: I didn't say anything.
Speaker 1: And it was at that point.
Speaker 2: Too, when they said, oh, we're not going to Westmead,
Speaker 2: We're going to go to Randwick. Because I found out
Speaker 2: later that the person that was doing that could do
Speaker 2: that treatment. There was on holidays because it was January,
Speaker 2: so you of course holidays, which kind of threw me
Speaker 2: because Charlie had lost his best friend to cancer maybe
Speaker 2: six months prior to that at Randwick, so all I'd
Speaker 2: kind of heard at that point was really negative things
Speaker 2: about the hospital from the parents.
Speaker 1: You can't blame them.
Speaker 2: So I'm really scared that we were going there, and
Speaker 2: that was it. It was like a death sentence. And
Speaker 2: I was like, I don't want to I don't want
Speaker 2: him to go there. I never would have agreed to it.
Speaker 3: And Charlie's where now, has he He's still in Tazzi
Speaker 3: or he's gone back home.
Speaker 2: No, he was still in Tazzi, so he was I
Speaker 2: didn't even know where he was half the time, but
Speaker 2: I knew he was with family somewhere. He was really
Speaker 2: struggling seeing Leo like that.
Speaker 4: Yes, of course.
Speaker 2: Yeah.
Speaker 7: And and that is one of the things about when
Speaker 7: when you have a child that needs all your attention,
Speaker 7: it's all your attention, yea, absolutely, and the other child
Speaker 7: or children in the family often you just like will
Speaker 7: catch up with them later.
Speaker 4: And in the meantime, this was your focus.
Speaker 2: It was and the fact that I was thinking that
Speaker 2: he would be okay as well, like if Leo went
Speaker 2: and I was just planning on ending out, and you know,
Speaker 2: I've never been suicidal, but in that point in time,
Speaker 2: I thought I couldn't imagine ever having to live without him,
Speaker 2: and luckily I didn't have to.
Speaker 3: Okay, So this is where we get a slight upswing,
Speaker 3: maybe not immediately, but is the good news or is
Speaker 3: it a positive happening when you get the diagnosis and
Speaker 3: how does that happen?
Speaker 2: So we'd been in Randwick for I think a few
Speaker 2: weeks still, so he was still in an ICU and
Speaker 2: like we rocked up, he's.
Speaker 4: Still in a coma. He's still in a coma.
Speaker 2: I'm not sure if he was in a coma or
Speaker 2: he was just unresponsive at this point, so he was
Speaker 2: just yeah, so either just unconscious or a coma, I'm
Speaker 2: not one hundred percent. But he was still attached to everything.
Speaker 2: His lungs still weren't working, and nothing was kind of working,
Speaker 2: and the machines were literally keeping him alive. And you know,
Speaker 2: when we rocked up, they weren't expecting him because all
Speaker 2: the paperwork had been transferred to Westmeads, so it was
Speaker 2: kind of like panic stations and short disaster even more
Speaker 2: disaster us. Well, you know, the neurologists came the next
Speaker 2: day and then the plasma faresa started and he ended
Speaker 2: up having like eight rounds of that.
Speaker 4: Oh he did.
Speaker 1: Yeah, so.
Speaker 2: That's when like he had to he still got scars
Speaker 2: on his body, so they had to put like the
Speaker 2: needle thing into.
Speaker 1: In his growing kind of area.
Speaker 2: And it's period hours they'd take all his blood out
Speaker 2: as his bload process, take remove his plasma and then
Speaker 2: you know, the blood goes back in with saline or
Speaker 2: something like that. So like even I think it was
Speaker 2: during that period when he had those While he was
Speaker 2: having those eight rounds, the neurologists.
Speaker 1: Came in one morning and he said, oh, no.
Speaker 2: You know, we've got some good news, okay, And it's like,
Speaker 2: we finally have a positive marker on one of the
Speaker 2: lumber puncture tests that were sent away in Hobart.
Speaker 1: And that's so is that it's autoimmune.
Speaker 2: And now he said the name, because he's super intelligent,
Speaker 2: it was g fap Astro's psytopathy. And then he goes,
Speaker 2: but it's so extremely rare. He's like, we've not seen
Speaker 2: a case of it before. We've only got case studies
Speaker 2: to do our research on and like he was discovered
Speaker 2: the same year Lea was born, like in two thousand
Speaker 2: and six, So.
Speaker 4: Which is extraordinary, isn't it. Yeah?
Speaker 2: Yeah, I always thought that's mean, Like it'ld always stuck
Speaker 2: to me, and it's saying that he was born that
Speaker 2: was when they discovered it and.
Speaker 4: What is it?
Speaker 3: What?
Speaker 4: So it's an autoimmune disease.
Speaker 2: Yeah, So it was his entire brain and spine and
Speaker 2: the ninja's were swollen. So that's what that's why he'd
Speaker 2: become like he had because the swelling and they.
Speaker 1: Which makes me think, gosh, he was brave when he
Speaker 1: was complaining.
Speaker 2: About headaches and sore eyes, like you know, as an adult,
Speaker 2: I think we'd be so much more vocal if that's
Speaker 2: what was going on with our body. You know, I've
Speaker 2: read so many case studies and trying to find out
Speaker 2: as much as I can about it.
Speaker 1: They still don't know why it happened to Leo.
Speaker 2: Sometimes it can happen if there's a tumor or an
Speaker 2: autoimmune disease already. You know, there's a few things they
Speaker 2: know that can cause it, and there's all different levels
Speaker 2: as well, So some people only kind of get wobbly
Speaker 2: legs or you know, a few little symptoms, or it
Speaker 2: seemed like he just got absolutely everything, absolutely everything.
Speaker 3: Yeah, and what so when you know, because the worst
Speaker 3: thing that can happen is that you have a diagnosis
Speaker 3: and there's no treatment.
Speaker 4: But that's just cruel.
Speaker 3: But they did have a treatment plan and a treatment
Speaker 3: pathing for LEO.
Speaker 2: So they said, so everything that they've done beforehand, treating
Speaker 2: for other autoimmune diseases does also benefit this autoimmune disease.
Speaker 2: Everything they'd been doing was helping fight this, and they
Speaker 2: said that they're one of the things they find that
Speaker 2: works most positive for improvements is really high dose steroids
Speaker 2: like prisoner Zone. I don't know why I've never let
Speaker 2: right it work correctly.
Speaker 4: He was read in this loan. Yes we yeah, so
Speaker 4: I learned how to say that one.
Speaker 1: It's got some ls and stuff.
Speaker 4: Yeah, that's a popular one.
Speaker 1: He was on massive doses of that.
Speaker 2: And one of the new neurologists came down and she
Speaker 2: gave me a case study. She's like, this is the
Speaker 2: most recent pediatric case study that we found on this
Speaker 2: autoimmune disease. Like, so you can have a look at it.
Speaker 2: And then that made me you know, someone had died
Speaker 2: on it, this had happened. There was only a few cases,
Speaker 2: and I was like, what when did they start giving
Speaker 2: him this or this? Because you know, I was basing
Speaker 2: it all on when the little one died, like and
Speaker 2: what they thought might have happened.
Speaker 1: So I was looking too much into it.
Speaker 2: But it's like, you know, there's no results up at
Speaker 2: this point, then you can try these two drugs. And
Speaker 2: after they've done everything and there was still no improvement,
Speaker 2: I was saying to them, well, I read that there's
Speaker 2: two other drugs that you can use. Can you start
Speaker 2: doing those? And they're like, let's just wait because there's
Speaker 2: they know, let's just wait and I don't know. A
Speaker 2: few days he's eyes started to open, so that was
Speaker 2: really positive. But then there was nothing again for a
Speaker 2: few days, and I in my head thought, oh, he's
Speaker 2: just defeated. He's woken up and no thanks, this is
Speaker 2: too hard. So yeah, then there was nothing and I
Speaker 2: kind of thought he'd given up. But then slowly, you know,
Speaker 2: he did start to stay awake for longer.
Speaker 3: What were you saying to him in this period because
Speaker 3: you were sitting vigil by him constantly.
Speaker 4: Yes, so I never left him.
Speaker 1: To go to the toilet and stuff.
Speaker 2: I had to, yes, but you know, apart from that, Yeah,
Speaker 2: I slept on the floor for the first few nights
Speaker 2: until I got titles and they'd to sleep on the
Speaker 2: floor next to his bed anymore.
Speaker 1: Then they had kind of had.
Speaker 2: A chair there because it was the old hospital, like
Speaker 2: they've got the just opened.
Speaker 1: The new one boos the old hospital at that point.
Speaker 1: So yeah, I just kind of sat there they were.
Speaker 2: I was kind of watching what the nurses were doing
Speaker 2: and kind of trying to learn different things, you know,
Speaker 2: placing pillows and stuff for pressure saws. You know, he
Speaker 2: was only he was in a nappy at that point.
Speaker 2: That was all he had, and he was he'd been
Speaker 2: he was so backed up, you know, there's so much
Speaker 2: and like stuff. They were trying to get everything out,
Speaker 2: you know, that was still trying to be friendly. Call
Speaker 2: it like old poonami type of thing to try and
Speaker 2: make chokes, you know, trying to wait for that.
Speaker 1: To come out. And yeah, I think I.
Speaker 2: Was just kind of trying to learn from them because
Speaker 2: I knew when he was if you you know, when
Speaker 2: he was going to wake up, that he was going
Speaker 2: to be more comfortable with me doing as much as
Speaker 2: what needed to be done.
Speaker 1: Then kind of a stranger just because of.
Speaker 4: Who he was and what were you saying to him.
Speaker 2: I didn't tell him how long he'd been in a camera.
Speaker 2: I didn't tell him it was Nintaszi. We were just
Speaker 2: I was just talking because about Finnegan, my sister's dogs,
Speaker 2: and Ollie. I was reading books. He loves the Roadblocks books,
Speaker 2: so I'm just reading those to him.
Speaker 3: And was there any were you looking at this point
Speaker 3: for any sign that he was there or could hear
Speaker 3: you or could tell what was going on, or you
Speaker 3: were just no.
Speaker 1: I definitely was, but there was no.
Speaker 2: I wasn't getting any indication that he knew A use
Speaker 2: to put earbuds in his ears.
Speaker 1: At nighttime just in case and have like you know,
Speaker 1: like forest chanty kind of.
Speaker 2: Music, and so he didn't have to hear the thing
Speaker 2: and the and the noise of the hospital, because I
Speaker 2: just thought, if you can hear that, he's going to
Speaker 2: be scared. So I was just trying to make it
Speaker 2: as relaxing as possible for him.
Speaker 1: And yeah, just read lots of books.
Speaker 2: And yeah, at that's time, I thought it was hard,
Speaker 2: but it was when he started to open his eyes.
Speaker 1: That was that was difficult?
Speaker 4: And why was that difficult?
Speaker 2: Because he couldn't communicate and he would just stare at me,
Speaker 2: and I would try and come up with a way
Speaker 2: to communicate, like, let's, you know, blink sick.
Speaker 1: Can he blink once for yes and twice for no?
Speaker 2: And you know, I'd ask him a question and he
Speaker 2: would purposely do the blinks. But then it was trying
Speaker 2: to figure out the next questions to try and help him,
Speaker 2: and that's when he kind of just shut his eyes again,
Speaker 2: like you know, and I felt like I was failing
Speaker 2: him because I didn't know what the right questions were
Speaker 2: or what he kind of needed, and.
Speaker 3: Because everything would have been so terribly hard for him,
Speaker 3: even a blink would have been would have taken all
Speaker 3: the effort in the world.
Speaker 1: Yeah, I imagine so absolutely.
Speaker 2: And then as he started to heal a bit more
Speaker 2: and they were they you know, a week more down
Speaker 2: the track, and like he wouldn't sleep either. At that point,
Speaker 2: he was just eyes open. So I was like, I
Speaker 2: can't leave because I don't want him to not see
Speaker 2: me kind of there, and then he as they were like, oh,
Speaker 2: his lungs seemed to be starting to work by themselves again,
Speaker 2: like they were looking at the charts and and like,
Speaker 2: we don't want to excavate him while he's not ready.
Speaker 1: We want to give him the best chance.
Speaker 2: We want to leave it there so the steroids can
Speaker 2: work and get his lungs stronger. And that, oh god,
Speaker 2: I hated that part of the thing, because he was
Speaker 2: he'd looked at me desperation for help, and I've just
Speaker 2: felt so helpless. He was gagging on the the tubes
Speaker 2: and you know they have to, you know, and they
Speaker 2: suction and the suction thing into his life lamb and yeah,
Speaker 2: and into his cheeks and you'd be trying to bite,
Speaker 2: bite down on it because it must have just felt
Speaker 2: horrible and been scary. But it was when he was
Speaker 2: gagging on it, and I'm just thinking, oh, and you
Speaker 2: just look at me for help, Like I just knew
Speaker 2: what his eyes were saying. It was just like, you know,
Speaker 2: help me, mum. And I I remember having a one
Speaker 2: thought and I've said this to a few people that
Speaker 2: I just went, I can't do this, like I can't
Speaker 2: be here and not help him, like this is breaking
Speaker 2: my heart.
Speaker 3: And then just it's like you're torturing you like you're
Speaker 3: torturing your son.
Speaker 2: I felt like it, absolutely, And but as quick as
Speaker 2: I had that thought, I had the thought that I'm
Speaker 2: not the one suffering here. He's the one suffering. So
Speaker 2: don't you dare go anywhere. You need to stay here
Speaker 2: and you know, and be strong for him.
Speaker 1: Yeah.
Speaker 3: Absolutely, Michelle, there's no doubt that you've been strong for him.
Speaker 4: No, like, no doubt. Extraordinary.
Speaker 3: Yeah, when was the first time that he spoke to you?
Speaker 4: And how was that?
Speaker 1: That was so emotional.
Speaker 2: So when they told me they were going to attempt
Speaker 2: to excavate him, I'm sure that's the word.
Speaker 1: I might be saying it wrong, but they're like, you can't.
Speaker 4: Is that when they take the tubes out?
Speaker 2: Yes, and then they've got it put the mask on him,
Speaker 2: which is really tight, and I was thinking, I don't
Speaker 2: know which one is going to hate more than that
Speaker 2: all the how tight.
Speaker 1: The mask is going to be.
Speaker 2: And so I had to kind of wait outside, and
Speaker 2: I get why, because it's probably a horrible thing for
Speaker 2: a parent to see that procedure. And then they came
Speaker 2: out and said he's ready, and I went in, and.
Speaker 1: Yeah, I was thinking I was just praying that he
Speaker 1: could talk.
Speaker 2: And I just remember and I've got a video of it,
Speaker 2: and I'm like, oh, I it's like.
Speaker 1: Sweetheart, and I'm like, like.
Speaker 2: I love you. Can you say anything? And you can
Speaker 2: hear my voice just going into crying. It was like
Speaker 2: no chance to be strong. And then he looked at
Speaker 2: me and he and this little little weak voice is
Speaker 2: like like hi, Like I love you too, and yeah,
Speaker 2: that was the best, the best thing I've ever in
Speaker 2: my life. And in hearing that, I just thought, as well,
Speaker 2: thank goodness, Like now he's that. They weren't sure that
Speaker 2: I'd have to put the put it back in or
Speaker 2: how his lungs would heal, but this just goes to
Speaker 2: show how strong he is. I said to the whole
Speaker 2: time that once he's better, you know, because he's always
Speaker 2: been in therapy for his you know, his autism and
Speaker 2: stuff and always gave it ridiculous, you know, two thousand
Speaker 2: percent and fight amusing sometimes when they say can you
Speaker 2: do this, and you know, act like it was an
Speaker 2: Olympic sport and you're like, you can come down a bit.
Speaker 2: And I just thought he's going to hate that mask.
Speaker 2: And yeah, they thought he'd have to have that on
Speaker 2: for a few weeks. I think it was only a
Speaker 2: few days he had to have it on, and I
Speaker 2: think he disliked that mask so much forced himself to
Speaker 2: cope without it. And yeah, so they were like, you know,
Speaker 2: we didn't think it was going to be this quick.
Speaker 2: And at that point that's we tell you what. That
Speaker 2: boy is a fighter, isn't he one hundred percent?
Speaker 4: His mom's a fighter, and he's a fighter.
Speaker 2: You know, I fell apart in behind the scenes when
Speaker 2: he was when he couldn't see me as soon as
Speaker 2: he woke. That was when I was like, Okay, tears
Speaker 2: stop now. Tears are stopping for me. Now it's his
Speaker 2: turn to if he needs to cry, it's his turn
Speaker 2: to kind of cry.
Speaker 1: Now I can't be crying anymore.
Speaker 3: Yeah, and then there was a continued journey back, slow
Speaker 3: but journey back to wellness.
Speaker 2: Yes, so that at that point they were like, we
Speaker 2: can go to the ward now, and which is great
Speaker 2: because the ICU was so noisy. It was so it
Speaker 2: was so noisy and overwhelming for him as well.
Speaker 3: And to be in a normal ward is like heaven
Speaker 3: compared to ICU. Absolutely, it is a stranger definition of heaven.
Speaker 3: Really changes.
Speaker 2: Yeah, And I lived on one of those pull out
Speaker 2: beds you know there's those little pull out couch sorry
Speaker 2: things for much over five months and I never complained
Speaker 2: for a second because it was fine. Like I was
Speaker 2: next to him, were comfortable. What more could ask for?
Speaker 2: I didn't have to be separated from him?
Speaker 4: So what what does your life look like now with
Speaker 4: Leo and Charlie?
Speaker 1: Very different?
Speaker 2: Like after Like we stayed in that ward for about
Speaker 2: four and a half months and before we got to
Speaker 2: transfer to the Ronald McDonald house, and that was heavenly.
Speaker 2: I just have to say that when he got to
Speaker 2: sleep in a real bed for the first five and
Speaker 2: the pillows, everything about.
Speaker 3: So lovely place and starlight are amazing as well when
Speaker 3: you've got a kid in long days in hospital. Yes,
Speaker 3: people can't even conceive of how happy you are to
Speaker 3: see captain starlight.
Speaker 1: And he has a favorite like to start with, he didn't.
Speaker 1: He was just like in the ward because he was
Speaker 1: totally paralyzed.
Speaker 2: He could talk, we couldn't eat still, so he's learning
Speaker 2: how to eat and he's super thirsty. I was hoping,
Speaker 2: I hope. It's so hard to share it more like
Speaker 2: I was hoping that he wouldn't remember any of that.
Speaker 2: And I asked him later and I was like, do
Speaker 2: you remember being in icing or something. He's like, yeah,
Speaker 2: I remember hearing someone talk about the food that they
Speaker 2: were eating, and they were having sausages or something. He's like,
Speaker 2: and I just wanted sausages so bad. And just how
Speaker 2: thirsty he was.
Speaker 4: Well, that's interesting, isn't it to know, Yes.
Speaker 3: When you think they can't here or you don't know
Speaker 3: how conscious they are.
Speaker 2: Yeah, and he could hear the food and and yeah,
Speaker 2: I just remember he had to he was thirsty, and
Speaker 2: he kept going, I'm so thirsty.
Speaker 1: And that's so you could just have the cotton tips
Speaker 1: and put the water in it.
Speaker 2: And I felt so filty, so I'd like, really soak
Speaker 2: those cotton tips.
Speaker 4: So I was really trying and wet his lips.
Speaker 2: And yes, yeah, But once we got up to the
Speaker 2: ward and the captain started to come in, he was
Speaker 2: I mean, he was still so very.
Speaker 4: Starlight by the way people like the cat happens the starlight,
Speaker 4: that's our captain.
Speaker 2: He was. He was still so six and being in
Speaker 2: somewhere so foreign, but you know, they were just really
Speaker 2: gentle with him. They've done what they're doing for so long.
Speaker 1: Now, they just they do it so well.
Speaker 2: And you know, they were general with him first, and
Speaker 2: then he was They were trying to encourage him to
Speaker 2: come to the buck once we learned how to use
Speaker 2: the hoist and get him into a chair and strap
Speaker 2: him in. They were trying to encourage him to come
Speaker 2: to the Starlight Room, but he was like, I want
Speaker 2: to wait for Charlie to come. And my parents had
Speaker 2: to fly back with Charlie. He started year eleven, so
Speaker 2: he was away from us apart from every second weekend.
Speaker 1: Oh wow, and that was.
Speaker 4: A hard How was their reunion?
Speaker 1: Very teary, very cheery, yoh, Charlie, Charlie.
Speaker 2: Yeah. I've got a photo of him next to Leo
Speaker 2: and you can just look on his faces.
Speaker 1: I've never seen that look before, but oh my god,
Speaker 1: he like.
Speaker 2: Fifteen, was having to get the train, then the light
Speaker 2: rail ter ran with hospital, and then he'd stay with
Speaker 2: us and then he'd have to go back on the
Speaker 2: Sunday evening. And that was the most heartbreaking bit because
Speaker 2: Leo would just just ball his eyes out. He cried
Speaker 2: more when Charlie would left than dealing with the whole
Speaker 2: situation that he was dealing with, Like, yes, heartbreaking, like
Speaker 2: seeing how upset he was when Charlie had to go,
Speaker 2: and you know, it was horrible having to say we'll
Speaker 2: see you in another fortnight type of thing.
Speaker 4: Yeah, you don't have to say that anymore, though, do you.
Speaker 1: Oh gosh, no, absolutely.
Speaker 2: And when we like when he was up for the
Speaker 2: school holidays, it was like heaven because we got to
Speaker 2: see him for a block of time. And then when
Speaker 2: we were leaving the day that we got to leave
Speaker 2: the Ronald McDonald house to come home, it was like
Speaker 2: scary because you've lived in this world. It's so detached
Speaker 2: from reality, and everyone's kind of going through a situation
Speaker 2: as well with their children, and everyone's supporting and not
Speaker 2: saying that people in reality art, but it was we'd
Speaker 2: left for a ten day holiday. I'd left the Christmas
Speaker 2: tree up. I had to say in the end of
Speaker 2: my parents packed that up. I don't want to see
Speaker 2: that when we come home after six months. And I
Speaker 2: just remember driving home and just crying a lot, and
Speaker 2: just being scared about what life was going to be
Speaker 2: like because you know, now Leo's in a wheelchair and
Speaker 2: he's you know, we're doing Inwitt and catheters, and it
Speaker 2: was just everything was different.
Speaker 1: He had to start a new school eventually.
Speaker 2: Yeah, just not have been in the house even for
Speaker 2: that time period of time, like you.
Speaker 4: Know, Leo everything.
Speaker 1: Leo was excited to get in the house.
Speaker 2: I don't know how long I spent rearranging the garage
Speaker 2: unnecessarily before I could even step through the front door,
Speaker 2: like once ago to the driveway. I was just crying,
Speaker 2: and you know, my parents were there and I was
Speaker 2: just in the garage doing stuff I did not need
Speaker 2: to do.
Speaker 1: So I just had to.
Speaker 2: Build the strength to go into the house for the
Speaker 2: past time. Then I was just like, what's happened to
Speaker 2: my house? But you know, obviously that's not important. But yeah,
Speaker 2: we're back. You know, it takes quite a while for
Speaker 2: it to feel a new kind of normal. And I
Speaker 2: remember the first time, you know, shortly after when we
Speaker 2: had to go back down to the hospital for a
Speaker 2: week and Leo said to me, I feel like they're
Speaker 2: going home now, doesn't it.
Speaker 1: And I was like, yeah, it's weird, it really does.
Speaker 1: It feels like Randwick's now the home.
Speaker 2: But even now when we go back when he used
Speaker 2: to go to Starlight because you know, when I was saying,
Speaker 2: going on a tangent going back, he was didn't want
Speaker 2: to go before Charlie, and then Captain Powers managed to
Speaker 2: convince him to go and make a birthday card for
Speaker 2: Charlie's sixteenth birthday and then we can bring Charlie in,
Speaker 2: you know, which eventually happened. But when he realized it
Speaker 2: was like PlayStations and the Xbox is there, and it
Speaker 2: was a it was more homely in the ward, like
Speaker 2: he had a lovely room in the ward.
Speaker 3: Yes, yes, yes, yes, yes, Well it's for children, isn't it.
Speaker 3: They understand children and they understand what children need.
Speaker 4: And when we were in.
Speaker 3: The children's hospital with Lewis, I remember it said on
Speaker 3: the there was a little like poster that a child
Speaker 3: had drawn and it said birds seeing fish swim and
Speaker 3: children play. Oh wow, And I always just thought of
Speaker 3: the simple truth of that. And then when you get
Speaker 3: to see your child play after not having been able
Speaker 3: to for so long.
Speaker 4: Yes, that is a thing of beauty.
Speaker 2: Yeah, And he would just look like he wouldn't even initially,
Speaker 2: and you know it's only actually been recently, like when
Speaker 2: we were there this week, he was the most outgoing
Speaker 2: I've ever seen him interactive because of his neurodivergence.
Speaker 1: And so if Charlie was he'd hang out with Charlie
Speaker 1: or he'd hang out with me.
Speaker 2: And you know, if other kids wanted to play a
Speaker 2: game with him, he would let them, but he wouldn't
Speaker 2: talk to them, he wouldn't look at them, but he
Speaker 2: could play and he wasn't being rude to them or anything.
Speaker 1: But it was.
Speaker 2: Yeah, the last few trips, I remember there was three boys,
Speaker 2: three or four boys, and Leah was there chatting with them,
Speaker 2: playing with him, and I was like, wow.
Speaker 1: Look at you, like you're not in confidence.
Speaker 2: And then this time here he was just well cheeky
Speaker 2: with the captains and he felt really really proud because
Speaker 2: he kind of went into the room and he hopped
Speaker 2: off half out of his wheelchair and they kind of
Speaker 2: celebrated him. And so then he was determined to say
Speaker 2: out of the wheelchair for as long as he could. Now,
Speaker 2: I'll let you know that he was agony, couldn't walk
Speaker 2: after the fact, but he wasn't letting him know that
Speaker 2: because they were they were so proud and happy for
Speaker 2: him to see such change.
Speaker 3: You know what that is I think that's Leo the
Speaker 3: lion Heart, isn't it.
Speaker 1: Yeah, at one hundred percent, absolutely it is. Yeah.
Speaker 3: Thank you so much for sharing like an extraordinary glimpse
Speaker 3: into a world that most people mercifully will never.
Speaker 4: Get to see.
Speaker 3: Yes, but you have, and a world in which you've prevailed.
Speaker 2: And I don't mean to interrupt, but one of the
Speaker 2: reasons that I try and share this story, you know,
Speaker 2: not only to promote how great Starlight is and how
Speaker 2: important they are, just in case there are ever any
Speaker 2: parents out there whose child goes through something like this,
Speaker 2: so that they can see that there is there is
Speaker 2: like a you know, there's a rainbow at the end
Speaker 2: of it, because when there's no answers and you just
Speaker 2: don't know, like you kids are so resilient, and you know,
Speaker 2: not to kind of give up hope.
Speaker 3: Michelle Burgess never expected to have to tell this story.
Speaker 3: What she's shared today is not just the medical reality
Speaker 3: of Leo's illness, but the emotional truth of what it
Speaker 3: means to love and care for your child when the
Speaker 3: future is uncertain. Leo's recovery is ongoing, and Michelle and
Speaker 3: her family continue to navigate that journey.
Speaker 4: One day at a time. Michelle spoke about.
Speaker 3: The comfort and support Leo received from the Starlight Foundation
Speaker 3: during his time in hospital, and if you'd like to
Speaker 3: support the work they do for seriously ill children and
Speaker 3: their families, you can find a donation link in the
Speaker 3: show notes.
Speaker 4: Thank you so much for listening to No Filter.
Speaker 3: The executive producer of No Filter is Breed Player. Audio
Speaker 3: production is by Jacob Brown, and video editing is by
Speaker 3: Josh Green. This episode was recorded at Session in Progress
Speaker 3: Studios and I'm your host, Kate Lanebrook.
Speaker 4: See you next Monday.
Speaker 3: Mamma Mia acknowledges the traditional owners of the land and
Speaker 3: waters that this podcast is recorded on