A NEW book and documentary tells the inspiring and moving story of Hayley Okines…
In many 13-year-old Hayley Okines is like any typical teenager. She likes clothes, boys, Justin Bieber, experimenting with eye make-up and reading books by Jacqueline Wilson.
But she also has to deal with things most teenagers never have to consider, such as baldness and hip problems.
Hayley suffers from a rare genetic ageing disorder called progeria that means she ages eight times faster than other people.
Although mentally she is still a teenager her body is already that of a 110-year-old woman. Her translucent skin may have little elasticity and something of a grey pallor but you barely notice this because Hayley’s big blue eyes sparkle so mischievously.
Her hair may grow only sparsely – just seven hairs to the square centimetre – but she responds with a characteristic flourish by covering up her head with brightly coloured bandanas and dreaming at night of awaking with flowing locks.
“It’s very annoying having an old lady’s body,” she says in her sweet voice . “But the thing I hate most is my lack of hair. I’ve wanted hair for as long as I can remember. I want to be able to flick it in the wind ,” she laughs.
Despite her physical problems Hayley is full of impish humour and exudes radiance and joie de vivre. “I want to live longer because I enjoy life ,” she says.
“There are ups and downs but I keep my chin up.” She suffers from arthritis, is at constant risk of a stroke or a heart attack and her hips keep sliding out of position due to deterioration in her bones.
On the day we talk she had once again been rushed to hospital to have her dislocated left hip manipulated back into the correct position.
This injury occurred despite the fact that Hayley has recently started wearing a hip brace 24 hours a day and has not been able to attend school since April due to her weakness in walking (she completes work online instead and hopes to go back to rejoin her friends soon).
She says the brace made her feel for the first time what it was to be old. “To begin with she absolutely hated wearing it,” says her mother Kerry, 37, “but she has now got used to it and it gives her a feeling of security.”
Hayley hopes fervently she won’t have to wear it for the rest of her life. Although customised with a funky purple lining, its presence is a reminder of the challenges she faces every day.
“I put her to bed every night and I don’t know if it is the last time I’m going to see her,” says her mother. “I try to push that thought to the back of my head. You never get used to it but you can learn to live with it.”
Worldwide, there are only 80 or so known cases of progeria at any one time. The average life expectancy for a child with the rare genetic mutation is just 13 years.
Hayley will be 14 on December 3. “I’m definitely not going to give in until I’m at least 18 so I can learn to drive – I’m going to get a Mini!” she says enthusiastically.
Knowledge of our own mortality is part of the human condition. It galvanises us to seek happiness. For Hayley and her family this is especially true.
“Some children with progeria pass away when they are still very young but I have known others who have gone on until they are in their early 20s,” says Kerry.
“We didn’t really celebrate Hayley’s 13th birthday because I was a little bit scared of what that age represented but this year, when she turns 14, we are going to have a big celebration.”
No doctor can predict how much longer Hayley has to live, although she does seem to be responding well to pioneering new treatment, even growing a few more centimetres in the past couple of years.
“No one knows how many more years the drugs will give me although I’ve known I could die from progeria for a while now,” she says. But she chooses not to dwell on this fact. “Remember, I am 13 which means I have an attitude and a messy room.”
Closer at hand is the frustration when she goes shopping with her best friend Erin who towers over her. The sort of clothes that appeal to Hayley’s fashion sense just hang off her body.
At 3ft 9in and weighing just 2½st, Hayley is the size of an average four year- old and her clothes have to be chosen
from very junior ranges.
Next spring she will embark on a pioneering drug trial into a chemical that may have the capacity to halt the ageing process.
“We are cautiously optimistic,” says Kerry, who has had her hopes dashed before. “I just want to find out if it’s a miracle drug like they’ve been saying,” adds Hayley.
“I take every day as it comes. I don’t think too much about what’s happened and I look forward to getting on with tomorrow.”
She is a sweet-natured girl who is loving, considerate and grateful for the support she has received from her friends, family and her remarkable mother, with whom she has just finished writing her autobiography.
Kerry comes across as forthright, direct, tough-minded and absolutely dedicated to ensuring her eldest child gets the best chances she can.
Hayley has two younger siblings, Louis, nine, and Ruby, six, who are not affected by progeria and who tower over their sister.
Kerry’s husband Mark, 50, from whom she separated last year, is equally determined to ensure that Hayley’s life is as enjoyable and enriching as it can be.
“Mum is very strong and really, really supportive of me. Last Christmas she asked me if I wanted to write my autobiography,” Hayley recalls. A publisher was duly found.
Hayley is now focusing on her career options. “I want to be a beautician or a photographer. I imagine it all. I just want to be a normal teenager.”