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Speaker 1: There is a family from the Northern Territory who have

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Speaker 1: had to relocate to Queensland, and well they have rallied

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Speaker 1: an army of friends and family and supporters to run

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Speaker 1: mini Facebook fundraisers to help cure their baby girl of

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Speaker 1: a rare genetic disease. Now joining me on the line

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Speaker 1: right now is Golden Witthrop. Good morning to you, Golden.

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Speaker 2: Oh, hi Katie, thanks for having me on the program.

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Speaker 1: Thank you so much for joining me now. Golden, you

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Speaker 1: and your partner and your little eyes from the Northern

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Speaker 1: Territory originally.

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Speaker 3: Aren't you.

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Speaker 2: Yeah, born and bred, Katie. I grew up in Malac

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Speaker 2: on Malac Heights as it's known now, and my parents

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Speaker 2: are still there, and I had both my kids in Darwin,

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Speaker 2: and yeah, we have a home there in Stuart Park

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Speaker 2: and our little boy was starting at Stuart Park Primary

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Speaker 2: at preschool. But yeah, we've had a huge change in

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Speaker 2: our lives and led us down here to the Sunny

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Speaker 2: Coast where we are now.

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Speaker 1: Golden, tell me exactly what happened that led you to

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Speaker 1: have to leave the Northern Territory and down to the

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Speaker 1: Sunshine Coast.

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Speaker 2: Well, we had a gorgeous little boy of sin and

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Speaker 2: he's five now. And when he was two and a half,

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Speaker 2: beautiful Tulula Moon came along and we had her at

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Speaker 2: home in Darwin, and all things were you know, trucking

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Speaker 2: along beautifully in terms of you know, family with two kids,

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Speaker 2: and the toddlers were running around. Tulula was just one, Katie,

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Speaker 2: and she just started to walk and was, you know,

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Speaker 2: changing her big brother and starting to dance and talk,

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Speaker 2: babbling a few words. And then one day, Katie, she

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Speaker 2: just started to trip over her feet and I firstally

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Speaker 2: noticed that. We thought, oh, maybe what's going on, you know,

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Speaker 2: and she started to crawl and not walk at all.

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Speaker 2: She'd cry out if we try to to encourage her

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Speaker 2: to walk, and thought maybe she's got, you know, something's

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Speaker 2: wrong in her back or shet, a tummy bug or

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Speaker 2: a virus. Then all of a sudden she resorted to

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Speaker 2: crawling and then her little arms were just crumble underneath her.

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Speaker 2: This all happened in a space of I guess three

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Speaker 2: or four weeks, Katie, and soon she couldn't move at all,

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Speaker 2: she couldn't speak anymore, she lost her voice, and we

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Speaker 2: were panic stations, Katie. We didn't know what was going on.

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Speaker 1: Oh, you would have been absolutely heartbroken, thinking, what's wrong

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Speaker 1: with our little girl, our beautiful little.

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Speaker 3: Girl, Golden. What happened? Like what happened after that?

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Speaker 1: I'm assuming it went to the doctor or went and

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Speaker 1: saw someone.

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Speaker 2: We saw medical staff at first and they didn't know

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Speaker 2: what was going on. But really, after months and months

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Speaker 2: in the Australian healthcare system, we were able to find

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Speaker 2: through this incredible genome sequencing study where they actually map

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Speaker 2: every gene in your body, they found out to Laula

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Speaker 2: had this very rare genetic disease called a hereditary spastic

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Speaker 2: paraplegia type fifty six, so it's also not as a

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Speaker 2: bit of a mouthful katie, also known as SPG fifty six.

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Speaker 2: And it was there that we were given this diagnosis

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Speaker 2: by the doctors that even they didn't know what to

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Speaker 2: do because it's such a rare disease.

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Speaker 3: All the lost Golden.

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Speaker 1: What does it mean now for your little girl to Lula?

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Speaker 1: You know what is the prognosis at the moment.

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Speaker 2: The doctor's told us it's a progressive disease, so that

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Speaker 2: means unfortunately that it's relentless. She's lost her ability to

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Speaker 2: walk and talk and crawl. She can't sit up by herself, Katie.

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Speaker 2: All of those things that you would imagine just come

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Speaker 2: naturally to a two year old, she doesn't have those things.

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Speaker 2: The disease will progress over time, and the doctors said

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Speaker 2: to us, because it's such a rare disease, the research

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Speaker 2: there isn't money and research for this sort of thing.

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Speaker 2: You know, the research is out there, it can be done,

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Speaker 2: but we need to fund it. So once we sort

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Speaker 2: of gathered ourselves LUs year and came to terms, came

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Speaker 2: to grips with this new world, we started to look

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Speaker 2: for research opportunities and then we found these research opportunities

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Speaker 2: here in Queensland and at the University of Queensland and Griffith.

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Speaker 2: Griffith University, we found twenty seventeen Australian of the Year

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Speaker 2: Alan mackay fim has already found a drug that works

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Speaker 2: in the dish for one of the more common hereditary

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Speaker 2: spastic paraplegs. So not till it us exactly, but these

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Speaker 2: guys are already doing this incredible research right they don't

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Speaker 2: have any money to do it. So we are trying

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Speaker 2: to fund the research to do this for our daughter

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Speaker 2: and for other children suffering from this disease around the world.

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Speaker 3: Oh wow, you know, I like there are.

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Speaker 1: I just always find it so inspiring when when people

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Speaker 1: like yourself are going through something that is so difficult,

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Speaker 1: and you think beyond your own situation, not only about

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Speaker 1: your little one, but about other families and how you

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Speaker 1: can try to help others from going through what you're

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Speaker 1: going through right now, Golden, Before I find out more

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Speaker 1: about that research and exactly how you're raising money, can

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Speaker 1: you tell me how is little Tulula going at the moment.

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Speaker 2: She is a joy, Katie. I just can't wait for

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Speaker 2: you to meet her when we come back to Darwin.

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Speaker 2: We're hoping to come back over the Chrisy Holidays. She's

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Speaker 2: a wonderful little human being and she's smart. She's got

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Speaker 2: this drive to learn. But it's a fight, you know.

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Speaker 2: Every day of the week we're going to therapy. She

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Speaker 2: has a full time job just trying to do what

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Speaker 2: other two year olds might do subconsciously. She does three

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Speaker 2: days of therapy a week. She has speech therapy, she

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Speaker 2: has occupational therapy. She really wants to learn, and it's

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Speaker 2: a very it's a long fight keeping this disease at bay.

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Speaker 2: And I guess the thing is, we just don't know

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Speaker 2: how fast this disease will progress because there's so little

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Speaker 2: research on it. All we know is that that is

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Speaker 2: the prognosis that it does progress, and that's why we're

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Speaker 2: in a race against time.

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Speaker 1: And you are, like you've said, you are doing your

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Speaker 1: best to raise money. Now one point five million over

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Speaker 1: one point five years is my understanding of your aim.

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Speaker 3: How are you going to do this, Golden.

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Speaker 2: We are going to do it through love and determination,

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Speaker 2: and I can see it's happening already, Katie. On Sunday,

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Speaker 2: my husband and I started a pre launch campaign with

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Speaker 2: our friends and family on Facebook. We put the word

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Speaker 2: out there, we said on Tuesday was going to launch.

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Speaker 2: But who wants to get behind us? And these mini

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Speaker 2: Facebook fundraisers, Well, it's so easy. With just a couple

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Speaker 2: of clicks, you can start these Facebook sundraisers online for

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Speaker 2: a charity, and we have a charity dedicated to this research.

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Speaker 2: We will be in gobsnacked, Katie. Yeah, we did a

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Speaker 2: count this morning, my husband and I and it's one

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Speaker 2: hundred and nine. I believe maybe even more now to

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Speaker 2: Lula's army. These many Facebook sundraisers are out there and

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Speaker 2: they've raised over one hundred and twenty thousand dollars.

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Speaker 3: Oh that's fantastic, gob snacked.

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Speaker 2: I'm floored.

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Speaker 3: Oh that's how we're going.

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Speaker 2: To do it. We're going to do it with all

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Speaker 2: of you guys, everybody, the community, the world.

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Speaker 1: How did you come up with this idea to sort of,

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Speaker 1: you know, to start this campaign because it seems like

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Speaker 1: so much, you know, one and a half billion dollars

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Speaker 1: over one point five years. But then when you look

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Speaker 1: at the fact that you've already raised more than one

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Speaker 1: hundred and twenty thousand dollars, that is phenomenal.

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Speaker 2: It's phenomena. And I have to hand it to my husband.

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Speaker 2: He found this Facebook fundraising tool and sort of looked

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Speaker 2: at it and he thought, you know, this is such

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Speaker 2: a long journey, Golden. We don't want to ask for

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Speaker 2: a one off hand out or donation. We want people

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Speaker 2: to join us on this mission because this really is

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Speaker 2: a long, long charge and it could be a long road,

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Speaker 2: but it's a noble road. It's a good road, and

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Speaker 2: it's the right road for us. It's our journey. So

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Speaker 2: we thought, let's get people on board. Let's see if

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Speaker 2: they want to join us on the journey and you

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Speaker 2: know what people do, and that's I think in a

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Speaker 2: world where we're so divided by certain subjects at the moment,

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Speaker 2: it's just such a beautiful thing and an opportunity for

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Speaker 2: people to come together for something good. And it doesn't

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Speaker 2: take much. It's just one click really and you can

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Speaker 2: start a fundraiser.

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Speaker 1: You're so right, What a wonderful thing that you've done,

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Speaker 1: you and your husband, for your little girl and for

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Speaker 1: all of the other families that I've no doubt are

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Speaker 1: going to be impacted.

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Speaker 3: They may not even know it yet, but.

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Speaker 1: I think that it's one of those things that you

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Speaker 1: know that I think is so important to do. Golden

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Speaker 1: Where can people go if they do want to find

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Speaker 1: out a little bit more info?

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Speaker 3: Because I reckon you've probably got your.

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Speaker 1: Friends that are based here in the territory, given the

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Speaker 1: fact that you're both born and bred from Darwin, I'm

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Speaker 1: sure you've got you know, the families of the little

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Speaker 1: ones that your son went to preschool with as well

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Speaker 1: or went to childcare with. I know that there will

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Speaker 1: be a lot of people out there listening who are

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Speaker 1: keen to support you. So what can they search for?

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Speaker 1: On Facebook?

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Speaker 2: They can search for our Moon's Mission. Our Moon's Mission

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Speaker 2: is the name of our campaign, so we've got a

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Speaker 2: website called Ourmoonsmission dot org. But if you're on Facebook

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Speaker 2: and you'd love to join the campaign and you want

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Speaker 2: to do a Facebook fundraiser, you can go to our

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Speaker 2: Moonsmission dot org. Or you can go to Talulaarmy dot

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Speaker 2: org and it'll link you straight to a Facebook fundraiser.

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Speaker 2: So just just look up our Man's Mission yep or

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Speaker 2: to Lula'sarmy dot org.

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Speaker 1: Oh good on you, Golden. Thank you so very much

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Speaker 1: for your time this morning. Please keep in contact with

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Speaker 1: us and let us know how to Lula is going.

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Speaker 1: I know you said before that you and your family

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Speaker 1: will be back here over Christmas, so let us know

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Speaker 1: if you are here in Darwin over the Christmas break.

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Speaker 2: Thank you so much, Katie, and thank you to your listeners.

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Speaker 3: Have a great day you too,