Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
And we know that. Well, a beautiful Territory family has
had to make the tough decision to sell their beloved
family home to fund a gene therapy treatment to combat
their daughter's rare neurodegenerative disease. Now, Chris and Golden White
rob selling their renovated property next week to go towards
(00:22):
the five million dollars that is needed to fund the
new gene therapy for their five year old daughter, Ta
Lula Moon. Now we have spoken. We've spoken to the
beautiful Golden Witrod before on the show, and we have
heard about her gorgeous little girl to Lula before she
joins me on the line right now. Good morning to you, Golden.
Speaker 2 (00:45):
Good morning Katie. How are you really good?
Speaker 1 (00:47):
I'm sorry we're running a little bit late today, Golden.
You and I, as I mentioned, you and I have
spoken on air before, but not for quite some time.
Can you tell our listeners a little bit about your beautiful.
Speaker 2 (00:59):
Girl, Oh, my daughter, t Lula. Well, she lights up
the room and she's as bossy as all how old.
The tragic part behind Salula's situation is she's battling a
very rare neurodegenerative disease. Katie, it's very rare. In fact,
(01:19):
she's the only kid diagnosed with this disease in Australia.
There are people all over the world with it, but
I think really because diagnoses are still so hard to
come by, that's why we find Slula being the only
one with it. The way that it sort of affects
the little tea is it impacts her ability to walk
(01:41):
and talk. And the surprising thing was is that she
was born you know, in that typical way, healthy birth
and feeding and thriving up until she was about fourteen
months old, and then she just sort of lost all
of her abilities and this really big a larch of regression.
(02:02):
I mean, we didn't know what was going on. We
thought it was something that must be fixable, like a
tick bite or something like that, you know. But in
the end, it was only through getting a whole genome
sequencing that we found out that Tulula has this very
rare genetic condition. And yeah, here we are today.
Speaker 1 (02:21):
Now, Golden, you and your husband Chris, you're a beautiful
Territory family. You've had to move away, haven't you, to
get that treatment for her.
Speaker 2 (02:32):
Yeah, that's right, Katie. Look, there isn't a treatment at
the moment, because when we got the diagnosis, which was
down in Brisbane, the doctors said, look, treatments can be
made for diseases like this, but because it's so rare,
pharmaceutical companies won't invest in the development of it. So
(02:53):
what we heard then was basically, there is potentially a
cure out there for our daughter. She can lead the
life she deserves. That we had to fund the treatment development.
So yes, we've moved from our home in Darwin down
here to where the research is so close to close
to Brisbane, and so close to close to Brisin the
(03:19):
past four years, had the great fortune of being surrounded
by a lot of good scientists with bigger brains than
I could ever imagine. The point Katie that we've developed
this gene therapy that's now ready to go to a
clinical trial.
Speaker 1 (03:35):
But you just say the money you were want, well.
Speaker 2 (03:38):
That's right. So to go to a clinical trial as
a mission in itself, I mean, yeah, you've got to.
You've got to. You can make it in the labs,
but then when you're ready to make it for human grade,
So this high quality treatment, you have to manufacture it
and that costs five million Australian dollars. So we've been
putting all of everything we can into it, and you know,
(04:00):
part of that everything is our home, so sadly, I mean,
it was our family home and it was where my
daughter was born. She was you know, born in that
living rome, and there's so many beautiful memories there, Katie.
But in the end, you know, those memories like my
family keep reminding me I've still got them, you do.
And so as tragic as it is to say goodbye
(04:22):
to this home and this beautiful home and this dream,
there is that bigger dream, you know, and we know
what we want to do. We said we put everything
in it that we can, and this is everything.
Speaker 1 (04:34):
Well, Golden, I look, I hope that the house sells
for a record amount of money in Stuart, part to
help your little family and to help t Laula. I
can't imagine how difficult all of this must be for you,
for your husband, and for your little boy as well.
But you know it's what you do right as a parent,
(04:56):
because you absolutely love and you're prepared to do anything
you need to for you little girl.
Speaker 2 (05:01):
That's exactly right, Katie's right out of my mouth much.
Speaker 1 (05:06):
Yeah, exactly well that I can't even imagine, Like, honestly,
you know, I can't even imagine how tough it's been
for you guys. So your house is now on the market.
It's on Beatrice Street in Stuart Park. It's a beautiful home.
I made sure I had to look at it online.
And when is it going to auction? And I mean, look,
(05:27):
it's it's so hard because you're giving away sort of
part of you in terms of your property sale in
order to help your daughter, and you want to I
mean you want it to sell for as much as possible.
Speaker 2 (05:38):
Absolutely we do. Yeah, Look, the auction is actually going
to be I can't believe it's come up so fast.
This Thursday at five point thirty pm. So Ray White
is hosting the auction and we won't be there, but
our hearts will be, that's for sure.
Speaker 1 (05:55):
So Golden, when you say this Thursday, you don't mean today?
Do Is it next Thursday? Coming up?
Speaker 2 (06:00):
Yeah?
Speaker 1 (06:02):
So seven days away? All right? Well, people can jump
on to real estate dot Com and have a look
at that. And look, not everybody's going to be able
to have a bit on the house, but what they
can still do is jump online and and you know,
donate some money towards finding or being able to fund
I should say this gene therapy. Now, you guys have
(06:24):
got a website and you've actually you've reached a point
where you're not only helping your beautiful girl, but you're
actually helping or doing your best to try to help
others in this space.
Speaker 2 (06:35):
One hundred percent. Yeah, our registered foundation has been supporting
families all over the world, and now that we've gotten
to this point that you know, a clinical trial is
in front of us. You know it's in the pipeline.
These families who have been watching and hoping that we
would get somewhere, they've seen at last, But it isn't
just money being poured down into this deep funnel of research.
(06:57):
It's actually at a point that their children and could
get dose. So while we're getting ready and working our
huts off to try to get to clinical trial and
make this medicine, we're making enough for a small batch
of for a human clinical trial of about half a
dozen and we're also laying the groundwork with the hospital
(07:18):
in Brisbane for those international patients to come. So we're
really hopeful that we can get the government awareness behind
that because we're also, you know, we're creating our researchers
and those scientists, they're creating a center of excellence. Yeah,
this is incredible day to the art gene therapy and
also creating a place for people to travel from overseas
(07:41):
to our hospitals, to our public health hospitals to receive
this life changing medicine. So I'm really hoping that they
will heed our calls for support. We've got grant applications in.
We really really need that support to get across the line.
I mean, you and I both know how much five
million BRE is to a family. We're not fires, but
(08:02):
we're not astrosmica. We're a family foundation. So if we
can get that government support, we can really continue to
prove that this is an investment worth continuing. You know,
like this, it won't stop it till it won't stop
at those kids, but it also is a replicable model
to treat other rare diseases. So you know, this is
(08:24):
just the beginning, Katie. We're really hopeful for the future
and we just need to keep pushing ahead.
Speaker 1 (08:29):
You're an absolute legend. Golden good on you and and
you and your husband, Chris. I know you know it
must be a really tumultuous journey, and you know there'd
be hard days, there'd be days where I'm sure you
know you feel absolute elation as you see those breakthroughs,
(08:50):
but you know the fact that it's money that's required.
It like it's you know, it's it's disheartening in some
ways when you think that as you touched on. You know,
some of these big comies they could do it. It's
like a drop in the ocean for them, but for
a little family, it's so much So it's so admirable
what you're doing. But I know it's exactly what a
mum and dad do for their children, exactly.
Speaker 2 (09:12):
You're so right, Well, we hold out hope and you
know we're just always so well supported by our darling
contingent of Tulu's army. I mean, the love and support
that we still receive from my hometown while we're living
down here, it's just gobsmacking. So thanks, thanks for your time, Katie.
Speaker 1 (09:29):
I really appreciate it anytime, anytime. Hey, before I let
you go, what's the website so people can jump online
if they're keen to find out a bit more of.
Speaker 2 (09:37):
Course www dot Ourmoonsmission dot org and They can find
us at our Moon's Mission on Facebook, Instagram, x and LinkedIn.
Speaker 1 (09:47):
Golden Thanks so much for your time this morning. I
really appreciate it all the best.
Speaker 2 (09:52):
Thanks Katie, thank you,
And we know that. Well, a beautiful Territory family has
had to make the tough decision to sell their beloved
family home to fund a gene therapy treatment to combat
their daughter's rare neurodegenerative disease. Now, Chris and Golden White
rob selling their renovated property next week to go towards
(00:22):
the five million dollars that is needed to fund the
new gene therapy for their five year old daughter, Ta
Lula Moon. Now we have spoken. We've spoken to the
beautiful Golden Witrod before on the show, and we have
heard about her gorgeous little girl to Lula before she
joins me on the line right now. Good morning to you, Golden.
Speaker 2 (00:45):
Good morning Katie. How are you really good?
Speaker 1 (00:47):
I'm sorry we're running a little bit late today, Golden.
You and I, as I mentioned, you and I have
spoken on air before, but not for quite some time.
Can you tell our listeners a little bit about your beautiful.
Speaker 2 (00:59):
Girl, Oh, my daughter, t Lula. Well, she lights up
the room and she's as bossy as all how old.
The tragic part behind Salula's situation is she's battling a
very rare neurodegenerative disease. Katie, it's very rare. In fact,
(01:19):
she's the only kid diagnosed with this disease in Australia.
There are people all over the world with it, but
I think really because diagnoses are still so hard to
come by, that's why we find Slula being the only
one with it. The way that it sort of affects
the little tea is it impacts her ability to walk
(01:41):
and talk. And the surprising thing was is that she
was born you know, in that typical way, healthy birth
and feeding and thriving up until she was about fourteen
months old, and then she just sort of lost all
of her abilities and this really big a larch of regression.
(02:02):
I mean, we didn't know what was going on. We
thought it was something that must be fixable, like a
tick bite or something like that, you know. But in
the end, it was only through getting a whole genome
sequencing that we found out that Tulula has this very
rare genetic condition. And yeah, here we are today.
Speaker 1 (02:21):
Now, Golden, you and your husband Chris, you're a beautiful
Territory family. You've had to move away, haven't you, to
get that treatment for her.
Speaker 2 (02:32):
Yeah, that's right, Katie. Look, there isn't a treatment at
the moment, because when we got the diagnosis, which was
down in Brisbane, the doctors said, look, treatments can be
made for diseases like this, but because it's so rare,
pharmaceutical companies won't invest in the development of it. So
(02:53):
what we heard then was basically, there is potentially a
cure out there for our daughter. She can lead the
life she deserves. That we had to fund the treatment development.
So yes, we've moved from our home in Darwin down
here to where the research is so close to close
to Brisbane, and so close to close to Brisin the
(03:19):
past four years, had the great fortune of being surrounded
by a lot of good scientists with bigger brains than
I could ever imagine. The point Katie that we've developed
this gene therapy that's now ready to go to a
clinical trial.
Speaker 1 (03:35):
But you just say the money you were want, well.
Speaker 2 (03:38):
That's right. So to go to a clinical trial as
a mission in itself, I mean, yeah, you've got to.
You've got to. You can make it in the labs,
but then when you're ready to make it for human grade,
So this high quality treatment, you have to manufacture it
and that costs five million Australian dollars. So we've been
putting all of everything we can into it, and you know,
(04:00):
part of that everything is our home, so sadly, I mean,
it was our family home and it was where my
daughter was born. She was you know, born in that
living rome, and there's so many beautiful memories there, Katie.
But in the end, you know, those memories like my
family keep reminding me I've still got them, you do.
And so as tragic as it is to say goodbye
(04:22):
to this home and this beautiful home and this dream,
there is that bigger dream, you know, and we know
what we want to do. We said we put everything
in it that we can, and this is everything.
Speaker 1 (04:34):
Well, Golden, I look, I hope that the house sells
for a record amount of money in Stuart, part to
help your little family and to help t Laula. I
can't imagine how difficult all of this must be for you,
for your husband, and for your little boy as well.
But you know it's what you do right as a parent,
(04:56):
because you absolutely love and you're prepared to do anything
you need to for you little girl.
Speaker 2 (05:01):
That's exactly right, Katie's right out of my mouth much.
Speaker 1 (05:06):
Yeah, exactly well that I can't even imagine, Like, honestly,
you know, I can't even imagine how tough it's been
for you guys. So your house is now on the market.
It's on Beatrice Street in Stuart Park. It's a beautiful home.
I made sure I had to look at it online.
And when is it going to auction? And I mean, look,
(05:27):
it's it's so hard because you're giving away sort of
part of you in terms of your property sale in
order to help your daughter, and you want to I
mean you want it to sell for as much as possible.
Speaker 2 (05:38):
Absolutely we do. Yeah, Look, the auction is actually going
to be I can't believe it's come up so fast.
This Thursday at five point thirty pm. So Ray White
is hosting the auction and we won't be there, but
our hearts will be, that's for sure.
Speaker 1 (05:55):
So Golden, when you say this Thursday, you don't mean today?
Do Is it next Thursday? Coming up?
Speaker 2 (06:00):
Yeah?
Speaker 1 (06:02):
So seven days away? All right? Well, people can jump
on to real estate dot Com and have a look
at that. And look, not everybody's going to be able
to have a bit on the house, but what they
can still do is jump online and and you know,
donate some money towards finding or being able to fund
I should say this gene therapy. Now, you guys have
(06:24):
got a website and you've actually you've reached a point
where you're not only helping your beautiful girl, but you're
actually helping or doing your best to try to help
others in this space.
Speaker 2 (06:35):
One hundred percent. Yeah, our registered foundation has been supporting
families all over the world, and now that we've gotten
to this point that you know, a clinical trial is
in front of us. You know it's in the pipeline.
These families who have been watching and hoping that we
would get somewhere, they've seen at last, But it isn't
just money being poured down into this deep funnel of research.
(06:57):
It's actually at a point that their children and could
get dose. So while we're getting ready and working our
huts off to try to get to clinical trial and
make this medicine, we're making enough for a small batch
of for a human clinical trial of about half a
dozen and we're also laying the groundwork with the hospital
(07:18):
in Brisbane for those international patients to come. So we're
really hopeful that we can get the government awareness behind
that because we're also, you know, we're creating our researchers
and those scientists, they're creating a center of excellence. Yeah,
this is incredible day to the art gene therapy and
also creating a place for people to travel from overseas
(07:41):
to our hospitals, to our public health hospitals to receive
this life changing medicine. So I'm really hoping that they
will heed our calls for support. We've got grant applications in.
We really really need that support to get across the line.
I mean, you and I both know how much five
million BRE is to a family. We're not fires, but
(08:02):
we're not astrosmica. We're a family foundation. So if we
can get that government support, we can really continue to
prove that this is an investment worth continuing. You know,
like this, it won't stop it till it won't stop
at those kids, but it also is a replicable model
to treat other rare diseases. So you know, this is
(08:24):
just the beginning, Katie. We're really hopeful for the future
and we just need to keep pushing ahead.
Speaker 1 (08:29):
You're an absolute legend. Golden good on you and and
you and your husband, Chris. I know you know it
must be a really tumultuous journey, and you know there'd
be hard days, there'd be days where I'm sure you
know you feel absolute elation as you see those breakthroughs,
(08:50):
but you know the fact that it's money that's required.
It like it's you know, it's it's disheartening in some
ways when you think that as you touched on. You know,
some of these big comies they could do it. It's
like a drop in the ocean for them, but for
a little family, it's so much So it's so admirable
what you're doing. But I know it's exactly what a
mum and dad do for their children, exactly.
Speaker 2 (09:12):
You're so right, Well, we hold out hope and you
know we're just always so well supported by our darling
contingent of Tulu's army. I mean, the love and support
that we still receive from my hometown while we're living
down here, it's just gobsmacking. So thanks, thanks for your time, Katie.
Speaker 1 (09:29):
I really appreciate it anytime, anytime. Hey, before I let
you go, what's the website so people can jump online
if they're keen to find out a bit more of.
Speaker 2 (09:37):
Course www dot Ourmoonsmission dot org and They can find
us at our Moon's Mission on Facebook, Instagram, x and LinkedIn.
Speaker 1 (09:47):
Golden Thanks so much for your time this morning. I
really appreciate it all the best.
Speaker 2 (09:52):
Thanks Katie, thank you,
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