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Speaker 1: Now, over the last day or so, we've been contacted

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Speaker 1: by a number of listeners really keen to support a

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Speaker 1: local family who've discovered that they're then six sixteen month

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Speaker 1: old son has a tumor and well after countless surgeries,

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Speaker 1: they're hoping to access treatment in the United States, but

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Speaker 1: it is going to be an incredibly costly experience or

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Speaker 1: exercise to try and get that support for their little one.

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Speaker 1: Now joining me on the line to tell me more

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Speaker 1: about his son's battle is his father, Dennis yev Danovich.

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Speaker 2: Good morning to your DJ.

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Speaker 3: Good morning, are you Ye're not bad?

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Speaker 2: Mate?

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Speaker 1: Talk me through little Kiali's journey so far.

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Speaker 3: Yeah, so it was just a little bit before Christmas

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Speaker 3: and myself and my family we went to play Shack

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Speaker 3: and Parmestan, just have a bit of a family family

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Speaker 3: morning and take the kid just for a bit of

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Speaker 3: a play and we are Kiali. We were playing in

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Speaker 3: the baby area whilst the two older kids was playing

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Speaker 3: in the bigger kids area and Calli was just running around.

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Speaker 3: Everything was pretty normal, and yeah, he just had a

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Speaker 3: bit of an episode where he just lost his balance

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Speaker 3: and coordination and unable to walk, and we thought he

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Speaker 3: just made a bit a bit tired, and so we

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Speaker 3: picked him up and just nursed him for a little

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Speaker 3: while and he then I started to sweat really badly.

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Speaker 3: So we were a bit concerned about like his behavior

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Speaker 3: and what was going on and one thing that's another,

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Speaker 3: and we took him to the Parmestan Regional Hospital, being

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Speaker 3: the closest hospital, where they then transferred us across the

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Speaker 3: ARDH for some tests and stuff like that. They basically

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Speaker 3: just we were told that it was potentially a seizure.

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Speaker 3: Then it happens regularly with young young children Kali's age,

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Speaker 3: and this seizure actually caused Kelli to have a bit

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Speaker 3: of a kink in his neck, and for about two

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Speaker 3: or three weeks post we were a bit unsure about

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Speaker 3: the king, what caused the king in the neck, So

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Speaker 3: we did a few more follow ups and a few

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Speaker 3: more appointments and stuff like that, and that we met

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Speaker 3: this really nice pediatrician at the Royal Dane Hospital who

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Speaker 3: pretty much issued an emergency MRI for us. And two

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Speaker 3: days later after that appointment, we went to this m

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Speaker 3: RI and yeah, Cai had his m RI and that

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Speaker 3: showed that he had a brain tumor in the lower

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Speaker 3: part of his brain, called the cerebellum, which was quite

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Speaker 3: devastating to Zoe and I that leaning on from that,

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Speaker 3: we kind of got rushed across the Queensland Children's Hospital

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Speaker 3: where we you know, a couple of weeks of what

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Speaker 3: week of planning, surgery planning and stuff like that, where

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Speaker 3: they basically informed us that the tumor where it kind

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Speaker 3: of developed and stuff like that, it started to wrap

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Speaker 3: around his brain stem and then started to drop into

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Speaker 3: his spinal cord, which is what they believe is causing

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Speaker 3: which caused the kink in the neck along with it

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Speaker 3: wrapping around the brainstem and compressing on a lot of

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Speaker 3: vital nerves and stuff like that. Yeah, so it was

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Speaker 3: just a fortunate enough event that it kind of happened

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Speaker 3: in front of us, so we were able to tell

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Speaker 3: the tell the medical staff and stuff like that what

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Speaker 3: kind of went on and stuff, and one thing led

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Speaker 3: to another and we actually caught it relatively early for

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Speaker 3: what it is, and they say that a lot of

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Speaker 3: these pandemomas, well these tumors don't really get diagnosed until

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Speaker 3: children are about four or five. So as bad as

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Speaker 3: the episode was, you know, in the situation, you know,

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Speaker 3: we were fortunate enough that he's shown shown us a

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Speaker 3: bit of a symptom to make us a bit more

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Speaker 3: persistent in terms of, you know, pushing.

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Speaker 1: For absolutely absolutely DJ tell me how old is little Kiali?

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Speaker 3: Now he's eighteen months?

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Speaker 2: Oh so he's still only a little fella made.

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Speaker 1: How's he you know, how's he been going with some

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Speaker 1: you know, with the treatment that he's been having to

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Speaker 1: get through, and how is that prognosis at this point?

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Speaker 3: Yeah, So, the the surgery went really well despite the

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Speaker 3: cumul location. We were kind of informed that it was

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Speaker 3: a it was a pretty bad area. You know, it

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Speaker 3: wasn't there wasn't really good. There was no good outcomes

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Speaker 3: to what we were hearing. But you know, based on

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Speaker 3: what they can see on m R is a lot

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Speaker 3: different to when they actually go in for the operation.

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Speaker 3: So fortunate enough for us. You know, we were told

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Speaker 3: the surgery was only going to go for about four

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Speaker 3: or five hours. That surgery pushed out to about a

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Speaker 3: nine hour operation during the time of operation because Ohie

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Speaker 3: and I were just you know, we weren't too sure

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Speaker 3: of what to expect, you know, when we got told,

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Speaker 3: you know, four or five hours and it pushes out

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Speaker 3: to eight hours and pushes out to the nine hour mark,

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Speaker 3: and we weren't sure to think if it was a

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Speaker 3: good thing or a bad thing, And.

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Speaker 2: You must have been beside yourselves.

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Speaker 3: Oh yeah, it was. There was I can definitely say

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Speaker 3: there was moments there where we were just walking around

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Speaker 3: the hospital very mindless. Felt like a bit of a zombie. Yeah,

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Speaker 3: just not just very uncertain, you know, you know what

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Speaker 3: what the future looked like. And I think the best

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Speaker 3: thing was we took our older kids with us to

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Speaker 3: be together with the family during it, and that kind

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Speaker 3: of kept us both preoccupied. I guess you could say.

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Speaker 1: Yeah, absolutely, you know, you're looking after after your other

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Speaker 1: two children and it does keep you.

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Speaker 2: You're busy.

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Speaker 1: So how is Kiale going at this at this point

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Speaker 1: in time.

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Speaker 3: He's doing great. He's loving being back back home. We're

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Speaker 3: back in do now, so you know, he's back around

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Speaker 3: his home surroundings and you know, just around his toys

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Speaker 3: and stuff. He's full of life, and he's always full

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Speaker 3: of life before before the operation. So you know, it's

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Speaker 3: good to see him come back to to some kind

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Speaker 3: of normality. We're not too sure you know that how

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Speaker 3: he's going to how you know the proton therapy is

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Speaker 3: going to play out in terms of how his behavior

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Speaker 3: and stuff's going to be during PUS you know, different

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Speaker 3: surroundings and stuff like that. But I think you know,

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Speaker 3: doing it together as a family or kind of keep

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Speaker 3: him in a very positive, positive mindset. You know, he

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Speaker 3: looks up to his looks up to his big brother

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Speaker 3: and sister.

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Speaker 1: So and so DJ Essentially, now, Kali does still need

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Speaker 1: to need to have some further surgeries and you are

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Speaker 1: hoping or you're hoping to access treatment in the United States.

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Speaker 1: Can you talk us through what that treatment is and

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Speaker 1: and what's really needed.

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Speaker 3: Yeah, So, so that he's only had the he's had

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Speaker 3: the one surgery in Queensland Children's Hospital which was actually

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Speaker 3: quite successful. They managed to remove a gross total of

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Speaker 3: the tumor. They called it a gross total resection, which

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Speaker 3: which basically up post scans now from the surgery state

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Speaker 3: that he's got about a three millimeter tumor remaining, which

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Speaker 3: is sufficient enough for us to have this proton therapy

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Speaker 3: offered to us. So there's actually like a criteria you

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Speaker 3: have to meet to have this proton therapy offered to you,

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Speaker 3: which is really fortunate for us to be able to

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Speaker 3: go down this line. Obviously. The only downside to this is,

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Speaker 3: you know, the cost is very extensive. There is Commonwealth

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Speaker 3: funding available for this treatment as it's outside of Australia.

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Speaker 3: We don't have a proton therapy clinic in Australia at

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Speaker 3: the moment. We believe that there's one going online by

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Speaker 3: the end of next year twenty twenty five. However we don't.

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Speaker 3: We don't have that kind of time to wait.

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Speaker 1: Well, you want to do absolutely everything you can to

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Speaker 1: your little fella to make sure that he's going to

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Speaker 1: be okay. You and Zoe want to do, you know,

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Speaker 1: like you want to do what any parent would do,

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Speaker 1: and that is to get them over there and get

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Speaker 1: that treatment.

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Speaker 3: We've come home basically from Brisbane and you know we've

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Speaker 3: sold whatever assets we had just to try and get

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Speaker 3: funds together. It was only that we had a few people,

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Speaker 3: just a few really close friends of ours, saying like, look,

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Speaker 3: you know, the community is a great place and you know,

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Speaker 3: why don't you just try your luck with a GoFundMe.

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Speaker 3: You know, like, you know, people really reach out and

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Speaker 3: dig deep for you know, for something like this, and

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Speaker 3: you know you had to put you know, hard for

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Speaker 3: Zoe and I, but you know, just had to put

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Speaker 3: the pride aside and you know, just reach out for

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Speaker 3: that help and and yeah, it's yeah, it's been amazing,

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Speaker 3: Like the last few days since I posted the gofund me,

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Speaker 3: the amount of support and people reaching out small businesses,

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Speaker 3: it's been incredible, Like, yeah, I was not expecting this

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Speaker 3: kind of you know turnaround and turn out, you know

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Speaker 3: like that. Yeah, just it's crazy the amount of people

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Speaker 3: that have reached out to us over the past three days.

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Speaker 1: And mate, I'm not surprised because, you know, you seem

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Speaker 1: like a lovely block. You seem like you've got a

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Speaker 1: beautiful little family and to be in this situation through

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Speaker 1: you know, no fault of your own in any way,

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Speaker 1: shape or form. For your little fella to be battling

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Speaker 1: this at eighteen months of age is such a tough

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Speaker 1: situation for you guys to be And I assume that

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Speaker 1: you've had to put your lives on hold as well

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Speaker 1: your jobs on hold last year and towards the beginning

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Speaker 1: of this year as this diagnosis was you know, was

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Speaker 1: was delivered to you.

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Speaker 3: Yeah, definitely, And that's basically what it's been. I'm actually

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Speaker 3: supposed to start an apprenticeship this year with Power and Water,

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Speaker 3: but you know I had I've had to put that

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Speaker 3: on hold, and likely Power Water you know, they you know,

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Speaker 3: they've been very supportive of the whole situation as well.

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Speaker 3: And yeah, no, it's it's what you do though, when

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Speaker 3: you know when he comes first at the end of

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Speaker 3: the day, and you know, and you know his health

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Speaker 3: is you know, my priority at the moment, and if

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Speaker 3: we can get him over there to get the treatment

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Speaker 3: stuff like that. Like I said, like we've had a

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Speaker 3: lot of people reach out. You know, other families that

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Speaker 3: have also been over to this Florida in particular for

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Speaker 3: this treatment as well, have all had really good success

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Speaker 3: stories and we just hope we can fit into that

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Speaker 3: same category and you know, come back with another positive

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Speaker 3: success story.

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Speaker 2: And let's make it happen. We've got to make it happen.

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Speaker 1: How much money at the moment you go fund me

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Speaker 1: pages sitting at ninety eight, five hundred and forty five dollars,

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Speaker 1: but you've still got a long way to go.

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Speaker 2: How much do you need to.

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Speaker 3: Get to the proton therapy alans one hundred and sixty

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Speaker 3: three thousand US, which obviously when you when you transfer

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Speaker 3: that across to Australian. Yeah, I think it works out

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Speaker 3: to be well over the two hudred and fifty thousand

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Speaker 3: dollars Australian. So that's just that aspect. You know, the

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Speaker 3: treatment goes for about forty four days and they only

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Speaker 3: do it Monday to Friday, so you know, potentially we're

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Speaker 3: looking at being over there for three months, will you know,

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Speaker 3: And like I said, we really want to try and

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Speaker 3: keep our family together, you know, to travel over there.

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Speaker 3: That them times just cover the proton therapy that's not included,

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Speaker 3: the flights to travel over there, the accommodation whilst we're there.

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Speaker 3: You know, I've reached out to Ronald McDonald house because

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Speaker 3: they know they put us up in Brisbane when we're there.

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Speaker 3: So we're just waiting to hear back from them as

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Speaker 3: well and just try and gauge you know, what kind

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Speaker 3: of assistance we can get or you know, you know

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Speaker 3: coming people go through every day.

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Speaker 2: That's right mate.

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Speaker 1: What about in terms of you mentioned before that there

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Speaker 1: is some Commonwealth government assistance that could be available. Do

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Speaker 1: you have any idea how much that would be?

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Speaker 3: So the common Wealth assistance pretty much covers the proton

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Speaker 3: therapy and the and one parent to travel across to

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Speaker 3: with with Kali. They so Kali six weeks post off

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Speaker 3: now they tend to or we've been told that they

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Speaker 3: like to. They would like to. They really want to

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Speaker 3: get him across to the USA before twelve weeks post

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Speaker 3: post Obviously, it just puts his chances a bit higher

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Speaker 3: and stuff like that in terms of how effective of

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Speaker 3: the radiation and stuff is. But sorry, I've had a

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Speaker 3: bit of a mind.

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Speaker 1: Yeah, tell us how is little Kiali doing at the moment,

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Speaker 1: And how's your little family unuch going at the moment,

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Speaker 1: because you know, like I can't imagine how tough it's

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Speaker 1: been for you and Zoe and and you know for

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Speaker 1: the kids.

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Speaker 3: Yeah, he's doing really well considering you know, like there

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Speaker 3: was a few little issues post surgery where you know,

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Speaker 3: he suffered a facial paralyzed paraization and a voice box paralyzation.

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Speaker 3: So he's got a bit of a staggy cheek, his

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Speaker 3: eli doesn't doesn't close anymore, and he really struggles to

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Speaker 3: swallow fluids and stuff like that now. But you know,

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Speaker 3: he's adapting to it day by day and we're seeing

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Speaker 3: massive changes in in you know how he's adapting to

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Speaker 3: to you know, he's a new kind of normal. Yeah,

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Speaker 3: and he just yeah, he absolutely adored his older brother

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Speaker 3: and sister.

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Speaker 1: So just I'm looking at a photo of them now, mate,

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Speaker 1: they look you look like you've got the most beautiful

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Speaker 1: little family.

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Speaker 2: He looks like a gorgeous little guy.

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Speaker 1: And and your other two children, they look like a beautiful, beautiful.

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Speaker 2: Trio of kids.

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Speaker 1: And and look, I know what the Northern Territory community

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Speaker 1: is like. I know that when the chips are down,

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Speaker 1: that is when people come together and really try to

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Speaker 1: help each other out. So, DJ, where can we Where

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Speaker 1: can we find this go fund me page? How can

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Speaker 1: people find it if they're listening this morning and they

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Speaker 1: want to help your little family?

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Speaker 3: Yeah, so I was posted on the go funmy page.

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Speaker 3: It's been it's been published on Mark Turner's Facebook page,

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Speaker 3: the MLA of Palmerston. It's been posted on his social media.

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Speaker 3: It's on my social media, it's on I'm going to

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Speaker 3: imagine it's on half of dar on social media. At

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Speaker 3: the moment, I reckon it is. It's gained a lot

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Speaker 3: of gained a lot of attention.

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Speaker 2: I've had half of Darwin contact me.

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Speaker 1: I think half of Darwin has contacted me to say

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Speaker 1: can we can we get you on? So people really

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Speaker 1: want to help, They really really want to help you.

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Speaker 3: Yeah. Look, and we're receiving you know, my partner's receiving

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Speaker 3: hundreds of messages a day since since we've posted it.

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Speaker 3: So I've posted the gofund me, but my partner's put

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Speaker 3: up a bit more of a personal outlook on you know,

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Speaker 3: what we've been through the past, you know, two months,

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Speaker 3: two or so months, and I think her her post

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Speaker 3: has definitely gained a lot of a lot of attention

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Speaker 3: just because it does give a bit of a better

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Speaker 3: insight to to what, you know, what we what we

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Speaker 3: felt as parents, you know, and there's some there's some

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Speaker 3: images also attached to that, you know, some some people

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Speaker 3: may not want to view, but you just to show people,

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Speaker 3: you know that, you know, like yeah, basically what we

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Speaker 3: went through. And it's not such an informative thing, it

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Speaker 3: kind of yeah, just more of.

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Speaker 2: A personal thing for people to understand.

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Speaker 3: Yeah. Yeah, So she's definitely gained a lot of attention

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Speaker 3: based on that. And you know, so we we do, yeah,

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Speaker 3: we feel the support. I mentally, I've had yet. Like

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Speaker 3: I said, I've had dozens of small businesses reach out

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Speaker 3: and provide assistance, you know, offered different types of assistance,

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Speaker 3: even if it's not financial. You know, they've offered to

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Speaker 3: do things for us. They've Yeah, it's been incredible and

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Speaker 3: I couldn't Yeah, I just couldn't think the people who

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Speaker 3: have supported us enough and you know, just.

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Speaker 2: Well, we'll make sure that we share.

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Speaker 1: Yeah, sure, we will make sure that we share that

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Speaker 1: link on the on the Mixed one o four nine

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Speaker 1: Facebook page so that people can jump on there and

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Speaker 1: and help your little family.

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Speaker 2: DJ.

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Speaker 1: Let's try and catch up again in the coming days.

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Speaker 1: I'm gonna if look, if the other media aren't listening

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Speaker 1: already this morning, I'm going to make sure that I

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Speaker 1: let them know as well about the situation that your

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Speaker 1: little family is going through. I think that if there

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Speaker 1: is any support that we as a Northern Territory community

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Speaker 1: can give you a little boy, and to give to

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Speaker 1: you guys, it is absolutely worth doing. So please keep

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Speaker 1: in contact with us, let us know if there's any

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Speaker 1: other way that we can help. But DJ, I really

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Speaker 1: appreciate you having a chat with me this morning. So

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Speaker 1: much love to you and Zoe and your little family.

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Speaker 1: Please keep us up to date with how things are

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Speaker 1: going with Kihali.

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Speaker 3: No. I definitely will, and I really appreciate you letting

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Speaker 3: me talk today and just sharing our story and getting

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Speaker 3: it out there, and any time mate him across.

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Speaker 1: This honestly, anytime, please keep please keep us up to

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Speaker 1: date with how things are going. We do want to

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Speaker 1: really try to help you guys to raise that money

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Speaker 1: to be able to get across there and make sure

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Speaker 1: that Kali can get that treatment.

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Speaker 2: That he needs.

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Speaker 3: Thank you very much.

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Speaker 1: Thanks Mike. Good to speak with you this morning. Thank you,

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Speaker 1: Thanks so much