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Speaker 1: And well, I'm very excited because I got contacted by

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Speaker 1: a local family whose little girl has got a rare

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Speaker 1: and complex genetic disorder. She does need to undergo a

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Speaker 1: major surgery in Melbourne. But I tell you, I'm excited

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Speaker 1: because seven year old April is in the studio with

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Speaker 1: me this morning, and she's a gorgeous little girl with

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Speaker 1: these Sparklier's pink shoes on that I want to actually

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Speaker 1: pinch from her, but unfortunately I think my feet are

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Speaker 1: a tiny bit too big. But I'm also joined in

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Speaker 1: the studio. Well buy April's mum, Kayleie, how are you

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Speaker 1: lovely to have you in the studio. And also granddad

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Speaker 1: David get a Yeah, good, lovely to have you both

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Speaker 1: in the studio. Will lovely to have all three of

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Speaker 1: you in the studio with me this morning. Now, Kayleie,

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Speaker 1: can you tell me a little bit about Fifer syndrome.

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Speaker 2: So April was born with five for syndrome. We didn't

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Speaker 2: find out till towards the end of my pregnancy. It's

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Speaker 2: not genetic, it's just luck of the drawer. Really, we're

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Speaker 2: just blessed with a with a baby with additional needs,

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Speaker 2: so it affects her skull and the way that her

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Speaker 2: bones are formed and stuff. So all her suitures and

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Speaker 2: her skull fused before she was born, so she had

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Speaker 2: no soft spots, no room for a brain to grow.

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Speaker 1: Yeah, and like, what was it like for you then

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Speaker 1: as a mom sort of when she was still unusual

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Speaker 1: and learning a little bit about you know about this

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Speaker 1: and I'm probably not really knowing anything about it. It

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Speaker 1: was one hundred thousand, Yeah.

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Speaker 2: Her conditions one in one hundred thousand, and we didn't

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Speaker 2: know anything about it. We were told not to google

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Speaker 2: it because you know, when you google things, it always

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Speaker 2: is the worst case scenario. But obviously I wanted to

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Speaker 2: know more, so I caggled it. And it was scary

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Speaker 2: for my fiancee and I. She's our firstby and we

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Speaker 2: had to fly to Melbourne to have her because they

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Speaker 2: had the specialized team there to be able to care

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Speaker 2: for her. Yeah, so we spent the first eight weeks

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Speaker 2: of her life in Melbourne.

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Speaker 1: And David, for you as grandpa, you're clearly very loved grandpa,

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Speaker 1: are Yeah? Your favorite.

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Speaker 3: Nois sometimes fais Pops. Yeah, A bit sad.

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Speaker 1: It sounds like a little April's got lots and lots

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Speaker 1: of love around her, a lot of love and a

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Speaker 1: lot of support. But I tell you what, it also

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Speaker 1: sounds like she's had to undergo a lot more than

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Speaker 1: what children of her age have undergone. So seven April,

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Speaker 1: seven years old, she just turned seven in March, just

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Speaker 1: turned seven in March. How many surgeries had has she

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Speaker 1: had to undergo already in her little life?

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Speaker 2: She's had eighteen surgeries, eighteen surgeries. She has her nineteenth

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Speaker 2: surgery coming up. We have to fly back to Melbourne

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Speaker 2: in August September for her bigger surgery.

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Speaker 1: Tell me what is involved in that biggest surgery.

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Speaker 2: So it's called a monoblock surgery. So it's a frame

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Speaker 2: device that they like attached to her skull and mid

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Speaker 2: face and it brings her mid face forward so that

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Speaker 2: they can open her airways and then you know, protect

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Speaker 2: her eyes a bit more than her eyes will sit

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Speaker 2: back in the orbit properly. And it's just for a

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Speaker 2: better quality of life for her.

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Speaker 1: And what's it like for you guys as a family,

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Speaker 1: You know, when April has to undergo these types of surgeries,

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Speaker 1: what's it like for you guys as a family in

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Speaker 1: terms of supporting her, supporting each other?

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Speaker 3: Yeah, we'll look ruled, which is my partner's mother. She

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Speaker 3: has been numerous times down in Melbourne with Kayle, my partner.

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Speaker 3: Jeanine's his mum. And I just said, Kallie, I said,

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Speaker 3: look to be fair to Janine and she doesn't mind

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Speaker 3: doing it. I said, look, I'm retired now. Next time

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Speaker 3: we have a big operation or something, I will go

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Speaker 3: down with you to support you. Jeanine's a very The

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Speaker 3: whole families are very supportive towards her. We don't put

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Speaker 3: her in cotton more. She is quite independent and she

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Speaker 3: can be independent and once she starts talking, she won't stop.

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Speaker 1: She's still a bit shy at the mind around me

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Speaker 1: because loud when she came in, right.

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Speaker 4: There's a lot of things around well, and you were

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Speaker 4: telling me Kaylie when she came in, because we're going

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Speaker 4: to have to get a photo with her after because

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Speaker 4: she looks just gorgeous.

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Speaker 1: She dressed herself this morning. April is your favorite cut,

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Speaker 1: it's your favorite color?

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Speaker 2: What's your favorite color?

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Speaker 1: Red? Even though you were what a gorgeous girl? Now,

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Speaker 1: now tell me in terms of this major surgery happening

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Speaker 1: in Melbourne, you've spoken about what's involved, what's going to

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Speaker 1: be involved though for your family in terms of being

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Speaker 1: there for a long period of time, by the sounds

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Speaker 1: of things and the support that you really require.

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Speaker 2: So we originally got told we would be away for

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Speaker 2: three months. Now we've been told her surgery is a

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Speaker 2: bit more complex. It's a seventeen plus hour surgery. So

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Speaker 2: we will be there for four to five months, which

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Speaker 2: means being separated from my son, my three year old

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Speaker 2: son and ma fiance as well. So yeah, having the

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Speaker 2: family not together is going to be really hard. Blakes

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Speaker 2: and mummies. Boy. Yeah, So it's you know, good that

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Speaker 2: he'll spend more time with dad, but being a part

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Speaker 2: for four to five months and obviously we can't afford

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Speaker 2: to fly them to us regularly, which is why my

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Speaker 2: best friend Shelby has started up a go fundme page.

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Speaker 1: Yeah, so you got this go fundme page, and it

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Speaker 1: is really to try and help, you know, in terms

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Speaker 1: of you having to be there for that period of time,

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Speaker 1: for you know, being away to.

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Speaker 3: That period because it's such a long period of tour,

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Speaker 3: we need transport and medical conditions don't supply transport. There

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Speaker 3: will also be time because of food and little things

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Speaker 3: which we take for granted, but still need to be paid.

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Speaker 1: For absolutely accommodation, accombination.

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Speaker 2: Pocket for accommodation.

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Speaker 1: Thing is, you know, this is something that you need

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Speaker 1: to do. It needs to happen. You know, this surgery

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Speaker 1: needs to happen. It's it's for April, for her to

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Speaker 1: have the best quality of life moving forward and what

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Speaker 1: you know, like what's it going to mean for her

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Speaker 1: in terms of you know, like moving forward and that

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Speaker 1: quality of life.

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Speaker 2: So the outcome for this surgery is she'll be having

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Speaker 2: three while we're there, and so she has a tracheostomy

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Speaker 2: which she breathes out of. She's now that since she

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Speaker 2: was two weeks old. So our goal is that this

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Speaker 2: surgery will open up her airways a bit more and

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Speaker 2: then hopefully we can come home with no Trackie.

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Speaker 1: That would be awesome.

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Speaker 2: Yeah, absolutely, There's only two children in the NT with tracheostomys, right.

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Speaker 3: And this was a this is a bit of a

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Speaker 3: learning cave. When we came back from Melbourne, April had

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Speaker 3: some conditions which she would medit straight back in the

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Speaker 3: hospital and Katie said to the doctor at the time, said,

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Speaker 3: so what's your plan moving forward? And he said, we

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Speaker 3: don't have one and Kelly said, for being frustrated money,

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Speaker 3: what do you mean you don't have one? And the

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Speaker 3: point is he said, well, look, she's one in one

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Speaker 3: hundred thousand. It's a very rare situation and it's been

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Speaker 3: something like twenty years since anybody had had a track. Well,

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Speaker 3: I mean there's all that too.

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Speaker 1: You see. Yeah, it's like it's so tough, you know,

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Speaker 1: but as a family, you guys want to make sure

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Speaker 1: that you're doing the absolute best that you can for

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Speaker 1: April so that you know, so that she is able

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Speaker 1: to do all the things that she should be able

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Speaker 1: to do as a seven year old girl. Yeah, and

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Speaker 1: you know that's a big thing, isn't it.

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Speaker 2: It is?

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Speaker 3: I mean, and we've had other people, like a top

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Speaker 3: in Zoomer if I can say they've done fundraises for

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Speaker 3: every initially said for one or two years, and now

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Speaker 3: they've done it for three or four years.

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Speaker 1: Isn't that lovely? Yeah?

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Speaker 3: And it's not only for April. There are other little

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Speaker 3: children with special needs. But they raised money through Zoomber

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Speaker 3: programs and that and people come and the donate, have

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Speaker 3: a donation, that donation goes to it. It also helps,

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Speaker 3: as I said, because when Before April was born, Kayley

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Speaker 3: was working full time. She's now had become full time

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Speaker 3: care mum for a special needs child. They've only got

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Speaker 3: one income.

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Speaker 1: Yeah, it makes it really tough. Yeah, makes it so tough.

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Speaker 1: And then being away for such a long period of time,

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Speaker 1: which absolutely have to do. It makes them really happy.

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Speaker 3: There's nothing up here it can be done for her.

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Speaker 1: No, well, especially you know when it is something it's

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Speaker 1: one in one hundred thousand, you know, it does make

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Speaker 1: it so difficult. Well, look, we will make share that.

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Speaker 1: We're sure that we share the go fund me page

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Speaker 1: up online so that people are able to jump online

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Speaker 1: and find out a little bit more, but also support

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Speaker 1: support you in April. And in terms of what's going

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Speaker 1: to be a really big you know, it's going to

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Speaker 1: be a big time. Three surgeries and quite extensive surgeries. Look,

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Speaker 1: I thank you all so much for coming in this morning.

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Speaker 1: It's lovely to meet you all, especially April. She's a

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Speaker 1: beautiful little girl. I love her outfit.

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Speaker 2: She looks very sassy and cheeky.

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Speaker 3: You want to be right, I mean we also look

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Speaker 3: like that we'll be spending Christmas in Melbourne too.

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Speaker 1: Yeah.

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Speaker 3: Again, at the end of the day. It's because it's

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Speaker 3: her repair or her health, her recovery which is a

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Speaker 3: determining factor.

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Speaker 1: Absolutely absolutely, and you've got to do what's right.

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Speaker 2: Will keep her her Facebook page updated, you're trying to

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Speaker 2: do an auction on there for also asking for people

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Speaker 2: to donate some things for the auction.

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Speaker 1: Well, look, if there is any way that we can

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Speaker 1: help you keep us up to date. We'll certainly make

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Speaker 1: sure our listeners are aware of what's going on, but

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Speaker 1: please keep us up to date as well. Yes, lovely

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Speaker 1: to have you all in the studio this morning. Thank

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Speaker 1: you so much. Well, thank you April for coming in

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Speaker 1: this morning. Darling a big thank you as well of

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Speaker 1: course to Kaylie Sachs and of course Grandpa David, thank you.

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Speaker 1: Thanks writing anytime, anytime, Thank you,