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Speaker 1: And we know that. Well, a beautiful Territory family has

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Speaker 1: had to make the tough decision to sell their beloved

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Speaker 1: family home to fund a gene therapy treatment to combat

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Speaker 1: their daughter's rare neurodegenerative disease. Now, Chris and Golden White

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Speaker 1: rob selling their renovated property next week to go towards

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Speaker 1: the five million dollars that is needed to fund the

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Speaker 1: new gene therapy for their five year old daughter, Ta

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Speaker 1: Lula Moon. Now we have spoken. We've spoken to the

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Speaker 1: beautiful Golden Witrod before on the show, and we have

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Speaker 1: heard about her gorgeous little girl to Lula before she

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Speaker 1: joins me on the line right now. Good morning to you, Golden.

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Speaker 2: Good morning Katie. How are you really good?

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Speaker 1: I'm sorry we're running a little bit late today, Golden.

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Speaker 1: You and I, as I mentioned, you and I have

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Speaker 1: spoken on air before, but not for quite some time.

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Speaker 1: Can you tell our listeners a little bit about your beautiful.

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Speaker 2: Girl, Oh, my daughter, t Lula. Well, she lights up

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Speaker 2: the room and she's as bossy as all how old.

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Speaker 2: The tragic part behind Salula's situation is she's battling a

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Speaker 2: very rare neurodegenerative disease. Katie, it's very rare. In fact,

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Speaker 2: she's the only kid diagnosed with this disease in Australia.

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Speaker 2: There are people all over the world with it, but

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Speaker 2: I think really because diagnoses are still so hard to

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Speaker 2: come by, that's why we find Slula being the only

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Speaker 2: one with it. The way that it sort of affects

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Speaker 2: the little tea is it impacts her ability to walk

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Speaker 2: and talk. And the surprising thing was is that she

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Speaker 2: was born you know, in that typical way, healthy birth

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Speaker 2: and feeding and thriving up until she was about fourteen

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Speaker 2: months old, and then she just sort of lost all

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Speaker 2: of her abilities and this really big a larch of regression.

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Speaker 2: I mean, we didn't know what was going on. We

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Speaker 2: thought it was something that must be fixable, like a

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Speaker 2: tick bite or something like that, you know. But in

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Speaker 2: the end, it was only through getting a whole genome

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Speaker 2: sequencing that we found out that Tulula has this very

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Speaker 2: rare genetic condition. And yeah, here we are today.

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Speaker 1: Now, Golden, you and your husband Chris, you're a beautiful

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Speaker 1: Territory family. You've had to move away, haven't you, to

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Speaker 1: get that treatment for her.

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Speaker 2: Yeah, that's right, Katie. Look, there isn't a treatment at

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Speaker 2: the moment, because when we got the diagnosis, which was

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Speaker 2: down in Brisbane, the doctors said, look, treatments can be

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Speaker 2: made for diseases like this, but because it's so rare,

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Speaker 2: pharmaceutical companies won't invest in the development of it. So

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Speaker 2: what we heard then was basically, there is potentially a

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Speaker 2: cure out there for our daughter. She can lead the

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Speaker 2: life she deserves. That we had to fund the treatment development.

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Speaker 2: So yes, we've moved from our home in Darwin down

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Speaker 2: here to where the research is so close to close

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Speaker 2: to Brisbane, and so close to close to Brisin the

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Speaker 2: past four years, had the great fortune of being surrounded

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Speaker 2: by a lot of good scientists with bigger brains than

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Speaker 2: I could ever imagine. The point Katie that we've developed

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Speaker 2: this gene therapy that's now ready to go to a

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Speaker 2: clinical trial.

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Speaker 1: But you just say the money you were want, well.

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Speaker 2: That's right. So to go to a clinical trial as

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Speaker 2: a mission in itself, I mean, yeah, you've got to.

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Speaker 2: You've got to. You can make it in the labs,

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Speaker 2: but then when you're ready to make it for human grade,

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Speaker 2: So this high quality treatment, you have to manufacture it

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Speaker 2: and that costs five million Australian dollars. So we've been

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Speaker 2: putting all of everything we can into it, and you know,

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Speaker 2: part of that everything is our home, so sadly, I mean,

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Speaker 2: it was our family home and it was where my

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Speaker 2: daughter was born. She was you know, born in that

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Speaker 2: living rome, and there's so many beautiful memories there, Katie.

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Speaker 2: But in the end, you know, those memories like my

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Speaker 2: family keep reminding me I've still got them, you do.

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Speaker 2: And so as tragic as it is to say goodbye

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Speaker 2: to this home and this beautiful home and this dream,

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Speaker 2: there is that bigger dream, you know, and we know

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Speaker 2: what we want to do. We said we put everything

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Speaker 2: in it that we can, and this is everything.

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Speaker 1: Well, Golden, I look, I hope that the house sells

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Speaker 1: for a record amount of money in Stuart, part to

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Speaker 1: help your little family and to help t Laula. I

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Speaker 1: can't imagine how difficult all of this must be for you,

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Speaker 1: for your husband, and for your little boy as well.

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Speaker 1: But you know it's what you do right as a parent,

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Speaker 1: because you absolutely love and you're prepared to do anything

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Speaker 1: you need to for you little girl.

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Speaker 2: That's exactly right, Katie's right out of my mouth much.

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Speaker 1: Yeah, exactly well that I can't even imagine, Like, honestly,

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Speaker 1: you know, I can't even imagine how tough it's been

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Speaker 1: for you guys. So your house is now on the market.

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Speaker 1: It's on Beatrice Street in Stuart Park. It's a beautiful home.

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Speaker 1: I made sure I had to look at it online.

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Speaker 1: And when is it going to auction? And I mean, look,

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Speaker 1: it's it's so hard because you're giving away sort of

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Speaker 1: part of you in terms of your property sale in

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Speaker 1: order to help your daughter, and you want to I

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Speaker 1: mean you want it to sell for as much as possible.

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Speaker 2: Absolutely we do. Yeah, Look, the auction is actually going

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Speaker 2: to be I can't believe it's come up so fast.

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Speaker 2: This Thursday at five point thirty pm. So Ray White

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Speaker 2: is hosting the auction and we won't be there, but

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Speaker 2: our hearts will be, that's for sure.

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Speaker 1: So Golden, when you say this Thursday, you don't mean today?

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Speaker 1: Do Is it next Thursday? Coming up?

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Speaker 2: Yeah?

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Speaker 1: So seven days away? All right? Well, people can jump

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Speaker 1: on to real estate dot Com and have a look

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Speaker 1: at that. And look, not everybody's going to be able

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Speaker 1: to have a bit on the house, but what they

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Speaker 1: can still do is jump online and and you know,

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Speaker 1: donate some money towards finding or being able to fund

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Speaker 1: I should say this gene therapy. Now, you guys have

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Speaker 1: got a website and you've actually you've reached a point

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Speaker 1: where you're not only helping your beautiful girl, but you're

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Speaker 1: actually helping or doing your best to try to help

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Speaker 1: others in this space.

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Speaker 2: One hundred percent. Yeah, our registered foundation has been supporting

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Speaker 2: families all over the world, and now that we've gotten

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Speaker 2: to this point that you know, a clinical trial is

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Speaker 2: in front of us. You know it's in the pipeline.

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Speaker 2: These families who have been watching and hoping that we

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Speaker 2: would get somewhere, they've seen at last, But it isn't

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Speaker 2: just money being poured down into this deep funnel of research.

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Speaker 2: It's actually at a point that their children and could

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Speaker 2: get dose. So while we're getting ready and working our

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Speaker 2: huts off to try to get to clinical trial and

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Speaker 2: make this medicine, we're making enough for a small batch

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Speaker 2: of for a human clinical trial of about half a

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Speaker 2: dozen and we're also laying the groundwork with the hospital

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Speaker 2: in Brisbane for those international patients to come. So we're

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Speaker 2: really hopeful that we can get the government awareness behind

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Speaker 2: that because we're also, you know, we're creating our researchers

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Speaker 2: and those scientists, they're creating a center of excellence. Yeah,

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Speaker 2: this is incredible day to the art gene therapy and

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Speaker 2: also creating a place for people to travel from overseas

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Speaker 2: to our hospitals, to our public health hospitals to receive

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Speaker 2: this life changing medicine. So I'm really hoping that they

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Speaker 2: will heed our calls for support. We've got grant applications in.

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Speaker 2: We really really need that support to get across the line.

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Speaker 2: I mean, you and I both know how much five

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Speaker 2: million BRE is to a family. We're not fires, but

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Speaker 2: we're not astrosmica. We're a family foundation. So if we

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Speaker 2: can get that government support, we can really continue to

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Speaker 2: prove that this is an investment worth continuing. You know,

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Speaker 2: like this, it won't stop it till it won't stop

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Speaker 2: at those kids, but it also is a replicable model

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Speaker 2: to treat other rare diseases. So you know, this is

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Speaker 2: just the beginning, Katie. We're really hopeful for the future

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Speaker 2: and we just need to keep pushing ahead.

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Speaker 1: You're an absolute legend. Golden good on you and and

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Speaker 1: you and your husband, Chris. I know you know it

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Speaker 1: must be a really tumultuous journey, and you know there'd

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Speaker 1: be hard days, there'd be days where I'm sure you

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Speaker 1: know you feel absolute elation as you see those breakthroughs,

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Speaker 1: but you know the fact that it's money that's required.

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Speaker 1: It like it's you know, it's it's disheartening in some

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Speaker 1: ways when you think that as you touched on. You know,

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Speaker 1: some of these big comies they could do it. It's

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Speaker 1: like a drop in the ocean for them, but for

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Speaker 1: a little family, it's so much So it's so admirable

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Speaker 1: what you're doing. But I know it's exactly what a

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Speaker 1: mum and dad do for their children, exactly.

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Speaker 2: You're so right, Well, we hold out hope and you

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Speaker 2: know we're just always so well supported by our darling

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Speaker 2: contingent of Tulu's army. I mean, the love and support

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Speaker 2: that we still receive from my hometown while we're living

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Speaker 2: down here, it's just gobsmacking. So thanks, thanks for your time, Katie.

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Speaker 1: I really appreciate it anytime, anytime. Hey, before I let

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Speaker 1: you go, what's the website so people can jump online

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Speaker 1: if they're keen to find out a bit more of.

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Speaker 2: Course www dot Ourmoonsmission dot org and They can find

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Speaker 2: us at our Moon's Mission on Facebook, Instagram, x and LinkedIn.

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Speaker 1: Golden Thanks so much for your time this morning. I

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Speaker 1: really appreciate it all the best.

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Speaker 2: Thanks Katie, thank you,