14-year-old Hayley Okines has co-written a book about her experience of living with Progeria. We talk to her mother about their story so far…

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Published on Monday, 05 November 2012 10:00

Last Updated on 09 November 2012

Jasmine Joynson

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Kerry Okines’ daughter, Hayley, suffers from Hutchinson Gilford Progeria Syndrome. This condition means that she ages about eight times faster than the average person. I asked Kerry about the work both she and Hayley do to raise awareness of the condition and the progress that they have already made. Despite being told she would probably not make it past her thirteenth year, Hayley is fast approaching her fifteenth birthday. As well as taking part in drug trials, being the subject of articles and documentaries and getting on with life as a 14-year-old, Hayley has co-written a book with her mother.

Can you talk us through how Hayley was first diagnosed and what you were told about the condition then?

Hayley was undergoing tests for about a year. From the age of one to just before her second birthday they weren’t sure what was wrong with her. They did blood tests, chromosome tests, they tested for cystic fibrosis. Because it’s so rare the doctors hadn’t come across it before. She was diagnosed by taking a skin sample and when they grew those cells the tests showed that the skin had very little elasticity which is something you find in older people. So then we were told it was Progeria.

You have chosen to very publicly address Hayley’s condition to raise awareness. Was this a difficult decision to make?

No, at the time it felt like the right thing to do. When we were first told about the condition it knocked the whole family for six. We got a lot of positive responses from doing the media work because the condition is so rare. We had people who fund-raised to send her to Disneyland. It really just spiralled very quickly. We were in one newspaper and then invited for a magazine shoot. People were interested in making a documentary.

What would you like to see happen as a result of your work?

We’ve had some good results already. Hayely’s been taking place in clinical trials in America which started just over four years ago. When Hayley was diagnosed there was nothing like that happening – people didn’t even know which gene was linked to progeria. Now they’ve identified the gene and this is the forth clinical trial Hayley’s been a part of. We’ve also helped three other families get diagnoses through doing the media. It’s hard work but it’s definitely been worthwhile.

Whose idea was it to write Old Before My Time?

It was a joint decision between me and Hayley. She’d done the documentary and magazine stories. Katie Price was doing documentaries and writing books so we joked that it would be funny if Hayley got her own book on the shelves. The whole thing just started from there. We’ve had really, really positive feedback. People are so impressed by how brave Hayley is.

You’ve recently had results from a study Hayley took part in. Can you outline what these drugs do and how they could be useful to people who suffer with Progeria?

These drugs are not only useful for Progeria children they will also help people that suffer with heart disease. They found some very positive results with the flexibility of the arteries in the heart. In older people, and people with Progeria, the arteries in the heart become stiffer which then causes blood flow problems which can lead to heart attacks and strokes. They’ve found that this new drug increases that flexibility and so lessens the risk of these. It’s taken a long time but it’s been worth waiting for.

Have you encountered any problems getting support for caring for Hayley? Do you think that there’s anything that could be done to improve the lives of children and their families that live with serious health problems?

It was quite difficult in the beginning. We had bereavement counselling and counselling as a family. We’ve just had the house adapted. A lift’s been put in because Hayley is in a wheelchair full-time now as her hips are permanently dislocated. Getting the funding and financial support for that was not too difficult. I think that it’s really the emotional support that is sometimes harder to some by. Hayley has a visit about once a month from her friend from Demelza (which is a charity that works with children who have life-shortening illnesses). I think it’s really important that she has this time so she can talk about anything she’s worried about. They go out and get a coffee or a pizza and have a chat. We had a lot of support as a family but I think that it would have been nice for Hayley to have more emotional support from earlier on.

When Hayley’s not travelling back and forth to the US or writing what does she enjoy doing?

She’s always on Twitter. She’s a little bookworm – at the moment she’s reading The Hunger Games. She loves The Wanted, she’s met them a couple of times and she collects all the posters. Hayley also enjoys hydrotherapy once a week. She loves sleepovers, make-overs, the kind of thing any 14-year-old likes.

If you are interested in finding out more here is a link to Amazon’s page about Old Before My Time:
www.amazon.co.uk/Old-Before-My-Time-Progeria

Image credit: photographer Chelsey Browne