Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Well. The mom of a fourteen year old Northern Territory
(00:02):
girl is calling for answers over why her daughter can't
receive specialist kidney treatment in Darwin. Catherine Lark says Audrey
survived kidney failure, spent eighteen months on dialysis, and received
a life saving transplant in Adelaide in April, but after
her underlying kidney disease returned, Audrey now needs ongoing plasma
(00:24):
exchange treatment, meaning that her family could be forced to
live in Adelaide indefinitely. Now, Catherine joins me on the line,
Good morning to you, Catherine.
Speaker 2 (00:35):
Hi, Katie, how are.
Speaker 1 (00:36):
You pretty good? Thank you so much for your time
this morning. Kat Can you start by telling us about
Audrey's journey.
Speaker 2 (00:45):
Audrey was diagnosed with kidney disease minimal change disease, which
mutated into FSSD.
Speaker 3 (00:53):
As she was three years old.
Speaker 2 (00:54):
So she's lived with her whole life, and she's gone
through a lot of different treatments life. Eighteen months ago
she went into full renal failure and required nightly dialysis
done at home here in Darwam for eighteen months. And yeah,
so then we've got the phone call on the twenty
(01:15):
fourth of April for a life saving kidney transplant, which
was just an incredible gift. We were a bit heartbroken
to find out that the disease came straight back within
twenty four hours, but during the time. Obviously she's fourteen now,
so it's eleven years of her life. The science has
(01:37):
changed a lot and the treatment processes have changed. Now
they treat her condition with plasma prasis, which is technically
another type of dialysis, and it can switch the disease off,
so which is obviously incredible. Yeah, but every person is different.
(02:00):
Person reacts differently to the treatment processes. Some people that
can switch off within a couple of weeks, a couple
of sessions. Others can be twelve months, eighteen months, you know,
everybody's different.
Speaker 1 (02:14):
Yeah, right, So, Kat, how is Audrey going at the moment.
Speaker 2 (02:18):
At the moment, she was actually kicking loads of goals.
The kidney transplant itself is incredible. It's grafted really well,
it's doing everything it's supposed to do. The aggressive treatment
actually started to put her in remission is what they
call it, and then she got exposed to a cold, which.
Speaker 3 (02:38):
Has now set her back.
Speaker 2 (02:40):
So now they're going to start that treatment again a
new trial drug which she'll receive on Wednesday back in Adelaide.
Speaker 3 (02:47):
We're in Darwin today, but we fly back to Adelaide
on the six am flight on Wednesday, and then we're
not sure when we're coming home.
Speaker 1 (02:57):
Oh God, yes, made Kat, that's hot. That's true. Hard
having to travel away, you know, ongoing is is really tough.
What's like? What has that uncertainty been like for your family?
Speaker 2 (03:11):
Oh, we just don't know what. We can't make plans,
We can't make holidays. Her brother is stuck up here
in Darwin. We live out of suitcases in the freezing cold.
Speaker 3 (03:22):
You know.
Speaker 2 (03:24):
Her favorite pastime is mud crabbing and she can't go. Yeah,
it's just you know, school holidays. We can't do anything.
There is absolutely we can't plan anything. You know, we
talk about Christmas. We don't know when that well we're
doing for it or where will be?
Speaker 1 (03:41):
Kat? Tell me? So, you know, there's no like, you're
not questioning the key that she's received, but you you're
really at the point now of asking why she can't
receive this treatment in Darwin. Is that correct?
Speaker 3 (03:54):
Yeah, that's basically my question. I've been advocating for better
renal facilities here in Darwin for pediatric because that's ultimately
our only barrier is that she falls under the pediatric window. Now,
Darwin the NT has excellent renal facilities here and our
clinicians and our staff up here are incredible.
Speaker 2 (04:19):
Audrey is fourteen.
Speaker 3 (04:20):
Years old, so she doesn't really fall under the tiny
kid kind of window.
Speaker 2 (04:26):
She's a young person who you know, she's my height,
the weight of a small adult, Her complexity of her
condition and the time that her treatment takes is very,
very limited. My thought is I was able to learn
how to do the peritonador dialysis and I'm not a
(04:49):
medical trained at or I'm not medically trained at all,
so I was able to do that with the support
of the Darwin Renal team and the Adelaide team. I
don't understand why our lives should be put on hold
indefinitely for a three hour treatment once a week that
(05:09):
can be done here, cav So.
Speaker 1 (05:11):
Can you just break this down for me, because I
want to make sure I can ask the right questions
then of the Health Department and also of the Health Minister.
So essentially, what you're telling me is that that because
Audrey is not eighteen years old yet, she can't actually
receive that treatment, which is available here in Darwar, because
(05:32):
she's got to wait four more years because she's not
an adult yet.
Speaker 2 (05:35):
Correct, That's exactly where we're at.
Speaker 1 (05:38):
That's wild yees.
Speaker 2 (05:40):
That is one hundred percent. Our lives are turned upside
down merely because of her birthday.
Speaker 1 (05:46):
Well, but also you know, like I think about it
from you know, from a cost perspective and the patient travel,
et cetera. That's absolutely required. She deserves to have that
treatment wherever it needs to be, you know, but the
patient travel lean to, I would imagine is quite costly
for the Northern Territory when she could actually be receiving
(06:06):
that treatment here in the Northern Territory.
Speaker 2 (06:09):
Yeah, one hundred percent. And that's the thing, like we
are flowing down to Adelaide every time she gets sick. Yeah,
well if we do this and we switch the disease
off and she gets exposed to something in six months time,
it's jump on a plane and go to Adelaide. So
so casin it can be done here.
Speaker 1 (06:30):
Yeah, So lay it all out for us. What is
what have you been told by you know, by health
officials at this point in time. Is it just simply
that it's that it is her age.
Speaker 3 (06:42):
Yeah, so I've written to everyone I can think. I've
written to rodal in hospital, I've written to patient Advocacy,
I've written to the minister, broken written to my local member,
everyone I can think, I've written to. The feedback that
I've received from her Adelaide doctors is that Darwin have
(07:04):
said no, that it comes down to one person making
a decision. Darwin have said no based on her age
and it doesn't fit their scope.
Speaker 1 (07:16):
I just think that's bullshit. Honestly, I think to have
this fourteen year old, your beautiful girl, having to uproot
her life, you know, on a whim, heading away, when
you know surely part of patient care is actually being
able to give her the most normal life possible.
Speaker 3 (07:36):
One hundred percent. We all know that people heal better
in their own environment. Everybody knows that the kidney doctors
are amazing and they're so focused on making sure that
kidney is healthy. But I have to look at the
whole picture. I have a whole child to take care.
Speaker 2 (07:50):
Of, and she's been isolated from her school. She has
an amazing school network and they're so supportive. You know,
her brother.
Speaker 3 (07:59):
And just general day to day like that doesn't it's
not healthy to be away from home.
Speaker 1 (08:06):
It's not like. To be honest with you, Cat, I
feel quite emotional listening to you, because like, I've got
a daughter that's that age, so I you know, I
can I can't understand how difficult it's been for you,
But I think about it from a real, you know,
getting to be with your peers and getting to do
the things you love perspective. And you know, if these
facilities are here in Darwin, well why not allow this
(08:28):
beautiful daughter of yours to be able to actually use them?
Speaker 3 (08:32):
Yeah?
Speaker 2 (08:33):
One hundred percent. And I'll keep pushing and I'll keep
pushing until someone can give me a clinical reason as.
Speaker 3 (08:39):
To why it can't be done here in Darwin.
Speaker 2 (08:42):
So it's not like it's unsafe. Our nurses here are
incredibly healented, and we have a nephrologist here. We have, ironically,
Audrey's original nephrologist is here in Darwin, honest econdment for
two years as a pediatrician at our hate and they're
still saying no.
Speaker 1 (09:02):
Well, like, this is the thing that I'm sort of
struggling to wrap my head around. Is I mean, obviously
based on everything you've said. But my understanding is that
when it comes to, you know, to kidneys. Here in
the Northern Territory, we actually like bad above our average.
We're pretty bloody good at it.
Speaker 3 (09:17):
We are we are Darwin has brilliant services. I would
not be here if I didn't think that they could
provide it.
Speaker 1 (09:26):
Kav to if there is anybody listening this morning that
is in a position where they could change this decision
for your girl, what would you say to them?
Speaker 3 (09:37):
Make it happen like it's life changing, like it's she
deserves it.
Speaker 2 (09:41):
I think my daughter is she's going to change the
world one day and this is just a hiccup along
her her road. And I think that if someone.
Speaker 3 (09:51):
Can make a difference and make this happen for her,
it would just it would be brilliant.
Speaker 1 (09:57):
And Kath, I know you've said as well, this isn't
just about Audrey, is that you'd like to see this
change so that other territory families don't have to go
through what yours is experiencing.
Speaker 2 (10:07):
Yeah, that's right.
Speaker 3 (10:08):
I think if this is happening to my family, what
other families are going through this where something you know
you've got an older kid that's being sent somewhere. So
it's some kind of treatment that possibly could be, you know,
provided here in Darwin, and it's just a birth date
that's stopping it.
Speaker 1 (10:28):
Unbelievable.
Speaker 3 (10:29):
I think I'll keep advocating for change.
Speaker 1 (10:32):
Well, Catherine, please stay in contact with us. We're going
to make sure that we pass this interview on to
the Health Minister's office and also to the Health Department
and certainly ask ourselves for some answers as to you know,
why this is the case and whether it can be changed.
So we'll do our best as well to make sure
that your voice is heard. But you're a bloody champion, mum, Catherine.
(10:56):
What a legend you are. An Audrey sounds like an
absolutely incredible young woman.
Speaker 2 (11:03):
Look she is, and I do. I genuinely believe that
she's going to change the world. So she does have
a Facebook page, Katie, if.
Speaker 3 (11:10):
You want to check it out, I would like to. Yep.
Speaker 2 (11:12):
It's just called Audrey's Awareness. It's a public page. It's
just about her journey and it goes back from when
she was three. I started it to raise awareness for
her condition and kidney disease.
Speaker 1 (11:26):
Catherine, thank you so much. For speaking with us this morning.
I will jump on and have a look and please
keep in contact with us. We'll keep in contact with
you as well as we hear anything from the Health
Department or from the minister's office.
Speaker 2 (11:39):
Great thanks Katie, thank you for your.
Speaker 1 (11:40):
Time, anytime at all. Please keep in contact with us. Catherine, awesome, Thanks,
thank you, thanks so much.
Well. The mom of a fourteen year old Northern Territory
(00:02):
girl is calling for answers over why her daughter can't
receive specialist kidney treatment in Darwin. Catherine Lark says Audrey
survived kidney failure, spent eighteen months on dialysis, and received
a life saving transplant in Adelaide in April, but after
her underlying kidney disease returned, Audrey now needs ongoing plasma
(00:24):
exchange treatment, meaning that her family could be forced to
live in Adelaide indefinitely. Now, Catherine joins me on the line,
Good morning to you, Catherine.
Speaker 2 (00:35):
Hi, Katie, how are.
Speaker 1 (00:36):
You pretty good? Thank you so much for your time
this morning. Kat Can you start by telling us about
Audrey's journey.
Speaker 2 (00:45):
Audrey was diagnosed with kidney disease minimal change disease, which
mutated into FSSD.
Speaker 3 (00:53):
As she was three years old.
Speaker 2 (00:54):
So she's lived with her whole life, and she's gone
through a lot of different treatments life. Eighteen months ago
she went into full renal failure and required nightly dialysis
done at home here in Darwam for eighteen months. And yeah,
so then we've got the phone call on the twenty
(01:15):
fourth of April for a life saving kidney transplant, which
was just an incredible gift. We were a bit heartbroken
to find out that the disease came straight back within
twenty four hours, but during the time. Obviously she's fourteen now,
so it's eleven years of her life. The science has
(01:37):
changed a lot and the treatment processes have changed. Now
they treat her condition with plasma prasis, which is technically
another type of dialysis, and it can switch the disease off,
so which is obviously incredible. Yeah, but every person is different.
(02:00):
Person reacts differently to the treatment processes. Some people that
can switch off within a couple of weeks, a couple
of sessions. Others can be twelve months, eighteen months, you know,
everybody's different.
Speaker 1 (02:14):
Yeah, right, So, Kat, how is Audrey going at the moment.
Speaker 2 (02:18):
At the moment, she was actually kicking loads of goals.
The kidney transplant itself is incredible. It's grafted really well,
it's doing everything it's supposed to do. The aggressive treatment
actually started to put her in remission is what they
call it, and then she got exposed to a cold, which.
Speaker 3 (02:38):
Has now set her back.
Speaker 2 (02:40):
So now they're going to start that treatment again a
new trial drug which she'll receive on Wednesday back in Adelaide.
Speaker 3 (02:47):
We're in Darwin today, but we fly back to Adelaide
on the six am flight on Wednesday, and then we're
not sure when we're coming home.
Speaker 1 (02:57):
Oh God, yes, made Kat, that's hot. That's true. Hard
having to travel away, you know, ongoing is is really tough.
What's like? What has that uncertainty been like for your family?
Speaker 2 (03:11):
Oh, we just don't know what. We can't make plans,
We can't make holidays. Her brother is stuck up here
in Darwin. We live out of suitcases in the freezing cold.
Speaker 3 (03:22):
You know.
Speaker 2 (03:24):
Her favorite pastime is mud crabbing and she can't go. Yeah,
it's just you know, school holidays. We can't do anything.
There is absolutely we can't plan anything. You know, we
talk about Christmas. We don't know when that well we're
doing for it or where will be?
Speaker 1 (03:41):
Kat? Tell me? So, you know, there's no like, you're
not questioning the key that she's received, but you you're
really at the point now of asking why she can't
receive this treatment in Darwin. Is that correct?
Speaker 3 (03:54):
Yeah, that's basically my question. I've been advocating for better
renal facilities here in Darwin for pediatric because that's ultimately
our only barrier is that she falls under the pediatric window. Now,
Darwin the NT has excellent renal facilities here and our
clinicians and our staff up here are incredible.
Speaker 2 (04:19):
Audrey is fourteen.
Speaker 3 (04:20):
Years old, so she doesn't really fall under the tiny
kid kind of window.
Speaker 2 (04:26):
She's a young person who you know, she's my height,
the weight of a small adult, Her complexity of her
condition and the time that her treatment takes is very,
very limited. My thought is I was able to learn
how to do the peritonador dialysis and I'm not a
(04:49):
medical trained at or I'm not medically trained at all,
so I was able to do that with the support
of the Darwin Renal team and the Adelaide team. I
don't understand why our lives should be put on hold
indefinitely for a three hour treatment once a week that
(05:09):
can be done here, cav So.
Speaker 1 (05:11):
Can you just break this down for me, because I
want to make sure I can ask the right questions
then of the Health Department and also of the Health Minister.
So essentially, what you're telling me is that that because
Audrey is not eighteen years old yet, she can't actually
receive that treatment, which is available here in Darwar, because
(05:32):
she's got to wait four more years because she's not
an adult yet.
Speaker 2 (05:35):
Correct, That's exactly where we're at.
Speaker 1 (05:38):
That's wild yees.
Speaker 2 (05:40):
That is one hundred percent. Our lives are turned upside
down merely because of her birthday.
Speaker 1 (05:46):
Well, but also you know, like I think about it
from you know, from a cost perspective and the patient travel,
et cetera. That's absolutely required. She deserves to have that
treatment wherever it needs to be, you know, but the
patient travel lean to, I would imagine is quite costly
for the Northern Territory when she could actually be receiving
(06:06):
that treatment here in the Northern Territory.
Speaker 2 (06:09):
Yeah, one hundred percent. And that's the thing, like we
are flowing down to Adelaide every time she gets sick. Yeah,
well if we do this and we switch the disease
off and she gets exposed to something in six months time,
it's jump on a plane and go to Adelaide. So
so casin it can be done here.
Speaker 1 (06:30):
Yeah, So lay it all out for us. What is
what have you been told by you know, by health
officials at this point in time. Is it just simply
that it's that it is her age.
Speaker 3 (06:42):
Yeah, so I've written to everyone I can think. I've
written to rodal in hospital, I've written to patient Advocacy,
I've written to the minister, broken written to my local member,
everyone I can think, I've written to. The feedback that
I've received from her Adelaide doctors is that Darwin have
(07:04):
said no, that it comes down to one person making
a decision. Darwin have said no based on her age
and it doesn't fit their scope.
Speaker 1 (07:16):
I just think that's bullshit. Honestly, I think to have
this fourteen year old, your beautiful girl, having to uproot
her life, you know, on a whim, heading away, when
you know surely part of patient care is actually being
able to give her the most normal life possible.
Speaker 3 (07:36):
One hundred percent. We all know that people heal better
in their own environment. Everybody knows that the kidney doctors
are amazing and they're so focused on making sure that
kidney is healthy. But I have to look at the
whole picture. I have a whole child to take care.
Speaker 2 (07:50):
Of, and she's been isolated from her school. She has
an amazing school network and they're so supportive. You know,
her brother.
Speaker 3 (07:59):
And just general day to day like that doesn't it's
not healthy to be away from home.
Speaker 1 (08:06):
It's not like. To be honest with you, Cat, I
feel quite emotional listening to you, because like, I've got
a daughter that's that age, so I you know, I
can I can't understand how difficult it's been for you,
But I think about it from a real, you know,
getting to be with your peers and getting to do
the things you love perspective. And you know, if these
facilities are here in Darwin, well why not allow this
(08:28):
beautiful daughter of yours to be able to actually use them?
Speaker 3 (08:32):
Yeah?
Speaker 2 (08:33):
One hundred percent. And I'll keep pushing and I'll keep
pushing until someone can give me a clinical reason as.
Speaker 3 (08:39):
To why it can't be done here in Darwin.
Speaker 2 (08:42):
So it's not like it's unsafe. Our nurses here are
incredibly healented, and we have a nephrologist here. We have, ironically,
Audrey's original nephrologist is here in Darwin, honest econdment for
two years as a pediatrician at our hate and they're
still saying no.
Speaker 1 (09:02):
Well, like, this is the thing that I'm sort of
struggling to wrap my head around. Is I mean, obviously
based on everything you've said. But my understanding is that
when it comes to, you know, to kidneys. Here in
the Northern Territory, we actually like bad above our average.
We're pretty bloody good at it.
Speaker 3 (09:17):
We are we are Darwin has brilliant services. I would
not be here if I didn't think that they could
provide it.
Speaker 1 (09:26):
Kav to if there is anybody listening this morning that
is in a position where they could change this decision
for your girl, what would you say to them?
Speaker 3 (09:37):
Make it happen like it's life changing, like it's she
deserves it.
Speaker 2 (09:41):
I think my daughter is she's going to change the
world one day and this is just a hiccup along
her her road. And I think that if someone.
Speaker 3 (09:51):
Can make a difference and make this happen for her,
it would just it would be brilliant.
Speaker 1 (09:57):
And Kath, I know you've said as well, this isn't
just about Audrey, is that you'd like to see this
change so that other territory families don't have to go
through what yours is experiencing.
Speaker 2 (10:07):
Yeah, that's right.
Speaker 3 (10:08):
I think if this is happening to my family, what
other families are going through this where something you know
you've got an older kid that's being sent somewhere. So
it's some kind of treatment that possibly could be, you know,
provided here in Darwin, and it's just a birth date
that's stopping it.
Speaker 1 (10:28):
Unbelievable.
Speaker 3 (10:29):
I think I'll keep advocating for change.
Speaker 1 (10:32):
Well, Catherine, please stay in contact with us. We're going
to make sure that we pass this interview on to
the Health Minister's office and also to the Health Department
and certainly ask ourselves for some answers as to you know,
why this is the case and whether it can be changed.
So we'll do our best as well to make sure
that your voice is heard. But you're a bloody champion, mum, Catherine.
(10:56):
What a legend you are. An Audrey sounds like an
absolutely incredible young woman.
Speaker 2 (11:03):
Look she is, and I do. I genuinely believe that
she's going to change the world. So she does have
a Facebook page, Katie, if.
Speaker 3 (11:10):
You want to check it out, I would like to. Yep.
Speaker 2 (11:12):
It's just called Audrey's Awareness. It's a public page. It's
just about her journey and it goes back from when
she was three. I started it to raise awareness for
her condition and kidney disease.
Speaker 1 (11:26):
Catherine, thank you so much. For speaking with us this morning.
I will jump on and have a look and please
keep in contact with us. We'll keep in contact with
you as well as we hear anything from the Health
Department or from the minister's office.
Speaker 2 (11:39):
Great thanks Katie, thank you for your.
Speaker 1 (11:40):
Time, anytime at all. Please keep in contact with us. Catherine, awesome, Thanks,
thank you, thanks so much.
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