Latest / 360 with Katie Woolf / Katie spoke with Golden Whitrod, whose daughter has an incurable degenerative condition, and is now rallying the community for a massive fundraiser

Transcript

Katie spoke with Golden Whitrod, whose daughter has an incurable degenerative condition, and is now rallying the community for a massive fundraiser · 360 with Katie Woolf

• 0:00
  Speaker 1: There is a family from the Northern Territory who have
• 0:03
  Speaker 1: had to relocate to Queensland, and well they have rallied
• 0:08
  Speaker 1: an army of friends and family and supporters to run
• 0:11
  Speaker 1: mini Facebook fundraisers to help cure their baby girl of
• 0:16
  Speaker 1: a rare genetic disease. Now joining me on the line
• 0:19
  Speaker 1: right now is Golden Witthrop. Good morning to you, Golden.
• 0:23
  Speaker 2: Oh, hi Katie, thanks for having me on the program.
• 0:26
  Speaker 1: Thank you so much for joining me now. Golden, you
• 0:30
  Speaker 1: and your partner and your little eyes from the Northern
• 0:34
  Speaker 1: Territory originally.
• 0:35
  Speaker 3: Aren't you.
• 0:37
  Speaker 2: Yeah, born and bred, Katie. I grew up in Malac
• 0:39
  Speaker 2: on Malac Heights as it's known now, and my parents
• 0:43
  Speaker 2: are still there, and I had both my kids in Darwin,
• 0:48
  Speaker 2: and yeah, we have a home there in Stuart Park
• 0:51
  Speaker 2: and our little boy was starting at Stuart Park Primary
• 0:54
  Speaker 2: at preschool. But yeah, we've had a huge change in
• 0:57
  Speaker 2: our lives and led us down here to the Sunny
• 1:01
  Speaker 2: Coast where we are now.
• 1:03
  Speaker 1: Golden, tell me exactly what happened that led you to
• 1:07
  Speaker 1: have to leave the Northern Territory and down to the
• 1:09
  Speaker 1: Sunshine Coast.
• 1:12
  Speaker 2: Well, we had a gorgeous little boy of sin and
• 1:16
  Speaker 2: he's five now. And when he was two and a half,
• 1:20
  Speaker 2: beautiful Tulula Moon came along and we had her at
• 1:22
  Speaker 2: home in Darwin, and all things were you know, trucking
• 1:27
  Speaker 2: along beautifully in terms of you know, family with two kids,
• 1:31
  Speaker 2: and the toddlers were running around. Tulula was just one, Katie,
• 1:36
  Speaker 2: and she just started to walk and was, you know,
• 1:40
  Speaker 2: changing her big brother and starting to dance and talk,
• 1:44
  Speaker 2: babbling a few words. And then one day, Katie, she
• 1:47
  Speaker 2: just started to trip over her feet and I firstally
• 1:52
  Speaker 2: noticed that. We thought, oh, maybe what's going on, you know,
• 1:55
  Speaker 2: and she started to crawl and not walk at all.
• 1:58
  Speaker 2: She'd cry out if we try to to encourage her
• 2:01
  Speaker 2: to walk, and thought maybe she's got, you know, something's
• 2:04
  Speaker 2: wrong in her back or shet, a tummy bug or
• 2:06
  Speaker 2: a virus. Then all of a sudden she resorted to
• 2:10
  Speaker 2: crawling and then her little arms were just crumble underneath her.
• 2:13
  Speaker 2: This all happened in a space of I guess three
• 2:17
  Speaker 2: or four weeks, Katie, and soon she couldn't move at all,
• 2:21
  Speaker 2: she couldn't speak anymore, she lost her voice, and we
• 2:27
  Speaker 2: were panic stations, Katie. We didn't know what was going on.
• 2:31
  Speaker 1: Oh, you would have been absolutely heartbroken, thinking, what's wrong
• 2:35
  Speaker 1: with our little girl, our beautiful little.
• 2:37
  Speaker 3: Girl, Golden. What happened? Like what happened after that?
• 2:41
  Speaker 1: I'm assuming it went to the doctor or went and
• 2:44
  Speaker 1: saw someone.
• 2:45
  Speaker 2: We saw medical staff at first and they didn't know
• 2:49
  Speaker 2: what was going on. But really, after months and months
• 2:52
  Speaker 2: in the Australian healthcare system, we were able to find
• 2:57
  Speaker 2: through this incredible genome sequencing study where they actually map
• 3:01
  Speaker 2: every gene in your body, they found out to Laula
• 3:04
  Speaker 2: had this very rare genetic disease called a hereditary spastic
• 3:07
  Speaker 2: paraplegia type fifty six, so it's also not as a
• 3:12
  Speaker 2: bit of a mouthful katie, also known as SPG fifty six.
• 3:17
  Speaker 2: And it was there that we were given this diagnosis
• 3:21
  Speaker 2: by the doctors that even they didn't know what to
• 3:23
  Speaker 2: do because it's such a rare disease.
• 3:25
  Speaker 3: All the lost Golden.
• 3:27
  Speaker 1: What does it mean now for your little girl to Lula?
• 3:32
  Speaker 1: You know what is the prognosis at the moment.
• 3:36
  Speaker 2: The doctor's told us it's a progressive disease, so that
• 3:40
  Speaker 2: means unfortunately that it's relentless. She's lost her ability to
• 3:44
  Speaker 2: walk and talk and crawl. She can't sit up by herself, Katie.
• 3:49
  Speaker 2: All of those things that you would imagine just come
• 3:52
  Speaker 2: naturally to a two year old, she doesn't have those things.
• 3:55
  Speaker 2: The disease will progress over time, and the doctors said
• 4:00
  Speaker 2: to us, because it's such a rare disease, the research
• 4:03
  Speaker 2: there isn't money and research for this sort of thing.
• 4:05
  Speaker 2: You know, the research is out there, it can be done,
• 4:09
  Speaker 2: but we need to fund it. So once we sort
• 4:12
  Speaker 2: of gathered ourselves LUs year and came to terms, came
• 4:16
  Speaker 2: to grips with this new world, we started to look
• 4:20
  Speaker 2: for research opportunities and then we found these research opportunities
• 4:26
  Speaker 2: here in Queensland and at the University of Queensland and Griffith.
• 4:30
  Speaker 2: Griffith University, we found twenty seventeen Australian of the Year
• 4:35
  Speaker 2: Alan mackay fim has already found a drug that works
• 4:40
  Speaker 2: in the dish for one of the more common hereditary
• 4:43
  Speaker 2: spastic paraplegs. So not till it us exactly, but these
• 4:47
  Speaker 2: guys are already doing this incredible research right they don't
• 4:51
  Speaker 2: have any money to do it. So we are trying
• 4:54
  Speaker 2: to fund the research to do this for our daughter
• 4:57
  Speaker 2: and for other children suffering from this disease around the world.
• 5:01
  Speaker 3: Oh wow, you know, I like there are.
• 5:04
  Speaker 1: I just always find it so inspiring when when people
• 5:10
  Speaker 1: like yourself are going through something that is so difficult,
• 5:13
  Speaker 1: and you think beyond your own situation, not only about
• 5:18
  Speaker 1: your little one, but about other families and how you
• 5:21
  Speaker 1: can try to help others from going through what you're
• 5:24
  Speaker 1: going through right now, Golden, Before I find out more
• 5:28
  Speaker 1: about that research and exactly how you're raising money, can
• 5:31
  Speaker 1: you tell me how is little Tulula going at the moment.
• 5:36
  Speaker 2: She is a joy, Katie. I just can't wait for
• 5:38
  Speaker 2: you to meet her when we come back to Darwin.
• 5:40
  Speaker 2: We're hoping to come back over the Chrisy Holidays. She's
• 5:43
  Speaker 2: a wonderful little human being and she's smart. She's got
• 5:46
  Speaker 2: this drive to learn. But it's a fight, you know.
• 5:50
  Speaker 2: Every day of the week we're going to therapy. She
• 5:53
  Speaker 2: has a full time job just trying to do what
• 5:55
  Speaker 2: other two year olds might do subconsciously. She does three
• 6:00
  Speaker 2: days of therapy a week. She has speech therapy, she
• 6:02
  Speaker 2: has occupational therapy. She really wants to learn, and it's
• 6:09
  Speaker 2: a very it's a long fight keeping this disease at bay.
• 6:12
  Speaker 2: And I guess the thing is, we just don't know
• 6:16
  Speaker 2: how fast this disease will progress because there's so little
• 6:19
  Speaker 2: research on it. All we know is that that is
• 6:21
  Speaker 2: the prognosis that it does progress, and that's why we're
• 6:24
  Speaker 2: in a race against time.
• 6:26
  Speaker 1: And you are, like you've said, you are doing your
• 6:30
  Speaker 1: best to raise money. Now one point five million over
• 6:35
  Speaker 1: one point five years is my understanding of your aim.
• 6:39
  Speaker 3: How are you going to do this, Golden.
• 6:42
  Speaker 2: We are going to do it through love and determination,
• 6:45
  Speaker 2: and I can see it's happening already, Katie. On Sunday,
• 6:49
  Speaker 2: my husband and I started a pre launch campaign with
• 6:52
  Speaker 2: our friends and family on Facebook. We put the word
• 6:55
  Speaker 2: out there, we said on Tuesday was going to launch.
• 6:58
  Speaker 2: But who wants to get behind us? And these mini
• 7:00
  Speaker 2: Facebook fundraisers, Well, it's so easy. With just a couple
• 7:05
  Speaker 2: of clicks, you can start these Facebook sundraisers online for
• 7:08
  Speaker 2: a charity, and we have a charity dedicated to this research.
• 7:13
  Speaker 2: We will be in gobsnacked, Katie. Yeah, we did a
• 7:16
  Speaker 2: count this morning, my husband and I and it's one
• 7:19
  Speaker 2: hundred and nine. I believe maybe even more now to
• 7:25
  Speaker 2: Lula's army. These many Facebook sundraisers are out there and
• 7:28
  Speaker 2: they've raised over one hundred and twenty thousand dollars.
• 7:31
  Speaker 3: Oh that's fantastic, gob snacked.
• 7:35
  Speaker 2: I'm floored.
• 7:36
  Speaker 3: Oh that's how we're going.
• 7:37
  Speaker 2: To do it. We're going to do it with all
• 7:39
  Speaker 2: of you guys, everybody, the community, the world.
• 7:42
  Speaker 1: How did you come up with this idea to sort of,
• 7:45
  Speaker 1: you know, to start this campaign because it seems like
• 7:48
  Speaker 1: so much, you know, one and a half billion dollars
• 7:51
  Speaker 1: over one point five years. But then when you look
• 7:53
  Speaker 1: at the fact that you've already raised more than one
• 7:55
  Speaker 1: hundred and twenty thousand dollars, that is phenomenal.
• 7:59
  Speaker 2: It's phenomena. And I have to hand it to my husband.
• 8:03
  Speaker 2: He found this Facebook fundraising tool and sort of looked
• 8:08
  Speaker 2: at it and he thought, you know, this is such
• 8:10
  Speaker 2: a long journey, Golden. We don't want to ask for
• 8:14
  Speaker 2: a one off hand out or donation. We want people
• 8:18
  Speaker 2: to join us on this mission because this really is
• 8:21
  Speaker 2: a long, long charge and it could be a long road,
• 8:24
  Speaker 2: but it's a noble road. It's a good road, and
• 8:27
  Speaker 2: it's the right road for us. It's our journey. So
• 8:31
  Speaker 2: we thought, let's get people on board. Let's see if
• 8:33
  Speaker 2: they want to join us on the journey and you
• 8:35
  Speaker 2: know what people do, and that's I think in a
• 8:38
  Speaker 2: world where we're so divided by certain subjects at the moment,
• 8:43
  Speaker 2: it's just such a beautiful thing and an opportunity for
• 8:45
  Speaker 2: people to come together for something good. And it doesn't
• 8:48
  Speaker 2: take much. It's just one click really and you can
• 8:50
  Speaker 2: start a fundraiser.
• 8:52
  Speaker 1: You're so right, What a wonderful thing that you've done,
• 8:55
  Speaker 1: you and your husband, for your little girl and for
• 8:59
  Speaker 1: all of the other families that I've no doubt are
• 9:02
  Speaker 1: going to be impacted.
• 9:04
  Speaker 3: They may not even know it yet, but.
• 9:06
  Speaker 1: I think that it's one of those things that you
• 9:08
  Speaker 1: know that I think is so important to do. Golden
• 9:11
  Speaker 1: Where can people go if they do want to find
• 9:13
  Speaker 1: out a little bit more info?
• 9:14
  Speaker 3: Because I reckon you've probably got your.
• 9:15
  Speaker 1: Friends that are based here in the territory, given the
• 9:18
  Speaker 1: fact that you're both born and bred from Darwin, I'm
• 9:21
  Speaker 1: sure you've got you know, the families of the little
• 9:24
  Speaker 1: ones that your son went to preschool with as well
• 9:27
  Speaker 1: or went to childcare with. I know that there will
• 9:29
  Speaker 1: be a lot of people out there listening who are
• 9:31
  Speaker 1: keen to support you. So what can they search for?
• 9:33
  Speaker 1: On Facebook?
• 9:35
  Speaker 2: They can search for our Moon's Mission. Our Moon's Mission
• 9:39
  Speaker 2: is the name of our campaign, so we've got a
• 9:41
  Speaker 2: website called Ourmoonsmission dot org. But if you're on Facebook
• 9:45
  Speaker 2: and you'd love to join the campaign and you want
• 9:47
  Speaker 2: to do a Facebook fundraiser, you can go to our
• 9:50
  Speaker 2: Moonsmission dot org. Or you can go to Talulaarmy dot
• 9:55
  Speaker 2: org and it'll link you straight to a Facebook fundraiser.
• 9:58
  Speaker 2: So just just look up our Man's Mission yep or
• 10:02
  Speaker 2: to Lula'sarmy dot org.
• 10:04
  Speaker 1: Oh good on you, Golden. Thank you so very much
• 10:08
  Speaker 1: for your time this morning. Please keep in contact with
• 10:10
  Speaker 1: us and let us know how to Lula is going.
• 10:13
  Speaker 1: I know you said before that you and your family
• 10:15
  Speaker 1: will be back here over Christmas, so let us know
• 10:17
  Speaker 1: if you are here in Darwin over the Christmas break.
• 10:20
  Speaker 2: Thank you so much, Katie, and thank you to your listeners.
• 10:23
  Speaker 3: Have a great day you too,