Story transcripts

Race Against Time

Friday, September 17, 2010
(nine images)

Reporter: Tara Brown
Producer: Stephen Rice

Three years ago we met an extraordinary young girl called Hayley Okines. She was nine, literally going on 70 at the time, the tiny victim of a rare ageing disease called Progeria.

Now most kids with Progeria only live until they're 13, killed by the same ailments that strike down the elderly.

Well, Hayley is twelve now.

Tara Brown has just had the pleasure of catching up with her again. She's the same funny, gutsy girl she remembers.

The difference is, this time, there's reason to hope.

Story contacts:

To learn more about progeria or donate to research. contact the Progeria Research Foundation:
www.progeriaresearch.org

Hayley Okines' website:
http://hayleyspage.com

Full transcript:

STORY -

TARA BROWN: Little British girl Hayley Okines is now 12 and acts like any other soon to be teenager. But progeria has been aging Hayley eight times faster than the rest of us since she was born. So - in medical theory, at least - that makes her closer to 96.

HAYLEY OKINES: That's just like the easy way of explaining it, but I don't feel like I'm 96. Everyone says I'm, like, all my friends and stuff, they say, "How old are you really?" I'm like, "I'm 12." They're like, "Oh."

TARA BROWN: You don't like being called 96?

HAYLEY OKINES: No.

TARA BROWN: So how much more time do you think she has left?

KERRY OKINES: Nobody knows. We just take each day as it comes and each day is a blessing.

TARA BROWN: Thankful for every extra day - it's the same for all parents of children with progeria. This cruel disease makes old people of the young, riddling these children with arthritis and leaving them susceptible to stroke and heart disease. A mutated gene - a devastating 1 in 8 million chance of bad luck - means most here won't live beyond their 13th birthday. When people ask you about progeria, what do you say to them?

HAYLEY OKINES: It's an aging disease which makes you grow. It makes you older than other children and makes you grow quicker.

TARA BROWN: I first met Hayley three years ago. Even then, it was clear time was running out because progeria is a disease that is always fatal. Just nine, Hayley was already familiar with how unfair it could be. Her friend Michaela had just succumbed to progeria, aged eight. What's her name?

HAYLEY OKINES: Michaela.

TARA BROWN: And why did you name her Michaela?

HAYLEY OKINES: 'cause my friend passed away.

TARA BROWN: Did she get very sick?

HAYLEY OKINES: Um, no, she just, she was playing outside, on the trampoline with her sister, and she just said that she didn't feel very well and she lay down and she went to the hospital in an ambulance with my mum and her mum and she went to sleep then.

KERRY OKINES: She says to me, "Mummy, am I going to die?" And I said, "We're all going to die." But she believes in heaven and fairies and angels and some things so she says she's gonna come back as an angel and annoy us. Gonna wake us up when we're asleep.

TARA BROWN: A bad angel?

KERRY OKINES: Yeah! It gets harder the older she gets because I think, "How many more years have I got with Hayley?"

TARA BROWN: With so little time on Hayley's side, all her parents Mark and Kerry had was prayer. But then, soon after we met her...

TARA BROWN: Where are you taking her to?

KERRY OKINES: Boston.

TARA BROWN: Hayley was invited to America - the first child in the world chosen to begin a drug trial doctors hope will stop the premature aging process and so save her life.

KERRY OKINES: I've always thought that Hayley would be the one to prove them wrong. I've always thought that she would be the one that would show them all how it's done.

TARA BROWN: And that's what she's doing at the moment?

KERRY OKINES: Yeah, that's what I hold on to.

TARA BROWN: Do you believe these drugs could save these children's lives?

DR IAN KILL: I think there is good cause to believe that it could substantially extend their life expectancies and this is what we're aiming for. There they are, growing on the bottom of the dish.

TARA BROWN: It's a race against time for world researchers like British cell biologist Dr Ian Kill. But they believe they've identified a new drug treatment that might be the answer.

DR IAN KILL: If we can extend these children's life spans to adulthood, into their 40s and 50s, wouldn't that be fantastic?

TARA BROWN: How difficult is it to put your precious child on a trial that no-one else has been on, with no guarantees?

KERRY OKINES: Very difficult, because they've got nobody, no other children that they can sort of go back on and tell us what might happen, or what they think will happen. So it was very scary. What are you having done, Hayley?

HAYLEY OKINES: An ECG.

KERRY OKINES: What's an ECG do?

TARA BROWN: First a series of tests. And then the big day - the first tablet.

FATHER: Don't bite it.

MOTHER: Big mouthful of drink. Another mouthful of drink?

TARA BROWN: So being the first person in the whole world to go on these trials, what's that like?

HAYLEY OKINES: It was really cool and exciting. It was quite scary, like, if anything went wrong then they probably wouldn't be able to stop it.

TARA BROWN: Why do you keep doing it?

HAYLEY OKINES: Um, 'cause it'll make me better.

TARA BROWN: Are you convinced it will?

HAYLEY OKINES: Yeah.

TARA BROWN: The treatment was bad enough, the side effects worse - weeks of nausea and exhaustion. But through it all, Hayley never gave up.

FATHER: So proud of you.

TARA BROWN: How much has her courage surprised you through these trials?

KERRY OKINES: She's just been absolutely amazing. She has the needles, and she hates needles, but she just goes in there and she just lets them do what she's got to do and she's fine.

TARA BROWN: The drug trials might be a huge milestone for progeria doctors, but for Hayley there's nothing bigger than her first day of high school.

KERRY OKINES: Good luck.

TARA BROWN: It's a day her family feared she wouldn't live to see.

KERRY OKINES: She'd got a big back-pack on her back and I said, "Do you want me to walk you in?" She went, "Mum, I can do it." Have a nice day.

HAYLEY OKINES: 'bye.

KERRY OKINES: I said, "But other mums are walking their children in." "Mum, I can do it." And I just had to leave at the door and watch her go through.

HAYLEY OKINES: 'bye. I love you!

KERRY OKINES: Love you.

HAYLEY OKINES: Oh, I feel sick. And now you're in high school - what's that been like?

HAYLEY OKINES: It was actually scary 'cause most, like everyone is taller and it was, like, we've gone from primary school, from being, like, the top, big kids, and then we're going to be the little kids again. I'm not going to bring my phone in tomorrow because they rang in the middle of class.

TARA BROWN: Hayley is now a celebrity in Britain, the star of this new documentary, 'Hayley, the 96-year-old Schoolgirl', which viewers in Australia can see in full when it screens on the Lifestyle You channel tomorrow night at 9:30.

HAYLEY OKINES: Yeah, I've made some really good friends in high school. And they're really nice.

TARA BROWN: And what are the rest of the kids like?

HAYLEY OKINES: Um, they're OK. Some people come up to me and say, like, stuff, "Oh, hello, you've been on TV," and stuff like that, so it's quite annoying sometimes. But everyone's really nice.

TARA BROWN: That's the life of a celebrity, Hayley, you just have to get used to it. Is anyone mean to you?

HAYLEY OKINES: No.

TARA BROWN: Do you hold out hope that she will grow into an adult?

KERRY OKINES: Yeah. Have to hold on to that. That's our only way forward.

TARA BROWN: Do you think about your daughter dying?

KERRY OKINES: I do. I think about it when I wake up in the morning and I think about it when I go to bed but just try to cut off and not think about it. I want to live for her, I want to make her life happy and fulfilled and when that time comes, that time will come.

TARA BROWN: Back in Boston, there's another round of drug trials, trying to delay that day, and they're even more gruelling for Hayley. There are more of the injections she hates so much, and again there are the awful side effects.

FATHER: What's that on your arm?

HAYLEY OKINES: It's an IV. FATHER: Did it hurt?

HAYLEY OKINES: It hurt when they put it in and I felt a bit sick. But I always feel sick anyway.

TARA BROWN: Hayley's courage has given hope to so many. Encouraged by her progress, most of these kids are now on the trials. And they certainly have something to celebrate if Hayley's early results are anything to go by.

HAYLEY OKINES: I've definitely grown taller. I've grown some more hair 'cause when we were going to Boston they drew a little square on the top of my head and counted the hairs in it and when we went in February there was more hairs there. And then when we went a couple of days ago they found seven hairs there. So it was, like, yay! Most people would just be like, "Oh, you've got seven hairs, great."

TARA BROWN: Because that's your big dream, isn't it, to grow hair on your head? So how keenly do you feel the responsibility of your work - it could mean the difference between life and death for someone like Hayley?

DR IAN KILL: Absolutely, we're all acutely aware of how devastating this disease is. And she is such a fantastic character, such a wonderful person and her parents work really hard to help Hayley and children like her.

TARA BROWN: And their efforts could also help the rest of us. If this drug trial is successful in stopping the aging process in children with progeria, then that could have huge implications for us all.

DR IAN KILL: Perhaps these drugs could also slow down the normal ageing process, or at least improve our health span, the time that we spend healthily.

TARA BROWN: So it may not make us live longer, but it may make us live longer without heart disease or stroke?

DR IAN KILL: Absolutely, yes.

TARA BROWN: Certainly, initial signs show some of Hayley's aging symptoms have been halted.

KERRY OKINES: Hold on to the seat of your pants!

TARA BROWN: Most importantly, her arteries, defying the normal pattern of progeria, are those of a regular 12-year-old.

HAYLEY OKINES: I know they won't make me, like, completely better, like, I won't look like a normal person, but I know that it might not feel like I've got progeria anymore.

TARA BROWN: And how does that make you feel?

HAYLEY OKINES: Really happy.

TARA BROWN: Really, really, REALLY happy?

HAYLEY OKINES: Yeah!

TARA BROWN: Well, Miss Hayley, what was that like?

HAYLEY OKINES: That was scary!

TARA BROWN: It was scary! Was it fun?

HAYLEY OKINES: Yeah!

TARA BROWN: How fast did you go, do you think?

HAYLEY OKINES: Really, really fast.

TARA BROWN: Do you know why you went so fast?

HAYLEY OKINES: Because the car is red!

TARA BROWN: This gathering, to celebrate the hope the drug trials are now offering, is a rare chance for some exceptional kids to share something the rest of us can never fully understand. A chance too for their parents to share some of the burden with those who intimately know their pain.

KERRY OKINES: I'm very proud of her.

TARA BROWN: What are you proud of?

KERRY OKINES: Absolutely everything. She's a superstar.

TARA BROWN: And have you seen a change in your mum and dad while you've been on these trials?

HAYLEY OKINES: I think they're growing stronger as well. Like, my mum, she's usually, like, quite sad about it. Sometimes she cries when she talks about me, but now she's sort of stopped crying now, so that's good.

TARA BROWN: Why do you think that is?

HAYLEY OKINES: Um, I think it's 'cause of the new treatment. Like, she knows that there's definitely hope, so she doesn't cry anymore.

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