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Brave Hayley,12:'I don't feel like an old lady'

When Hayley Okines was a baby, doctors warned her parents she faced an early death as she suffers a rare ageing condition.

With no known cure, mum Kerry and dad Mark were told she could die of a heart attack or stroke by her early teens.
But after a series of drugs trials, the 12 year old – who has the frail body of a woman in her 90s – is enjoying a new lease of life.

“My body is ageing eight times faster than normal,” explains brave Hayley, from Bexhill-on-Sea, East Sussex. “But just because I’m expected to have a short life, doesn’t mean I will. I don’t feel like an old lady.”

When Closer last spoke to Hayley in February 2008 she’d been taking part in a drug trial to stop her bones becoming more brittle and slowing the onset of heart disease. 

Hayley, who was diagnosed with Hutchinson-Gilford progeria syndrome aged one, was already suffering problems usually associated with old age including arthritis, baldness and high blood pressure. There are only 63 sufferers worldwide.

But doctors have been stunned by Hayley’s progress since she began the trial. She’s grown 4in, her heart is normal for a child her age and her hair has started to grow back.

Hayley now has eyebrows and lashes. “My dream is still to grow hair on my head, but I’m hoping to get a wig soon,” she says.

The treatment – usually for breast and bowel cancer patients – isn’t available in Britain, so she visited America every four months with her mum Kerry, 36, and dad Mark, 48, for tests and takes medication daily. But the drug had terrible side effects.

“I felt sick and really tired, so I slept loads and didn’t eat,” says Hayley. “I thought, ‘Why am I taking these tablets,’ but I kept telling myself, ‘You’ll get hair, you’ll grow.’”

Incredibly, just months after taking the drugs Hayley – who still wears clothes for 4/5 year olds – had grown over an inch.

“I didn’t have to stand on tiptoes to look in the mirror any more,” she says.

After two years Hayley – whose brother Louis, eight, and sister Ruby, five, are healthy – was offered another experimental drug.

By the time Hayley started secondary school last September, she’d reached 3ft 8in tall – still a foot shorter than the average 12 year old.

“At my old school there were still kids the same size as me, but at secondary school everyone there seemed really big while I was tiny,” says Hayley, who dreams of becoming a photographer. 

“I worried someone might knock me over, but everyone has been kind to me and now I run around like a maniac.”
Remarkably, when she went back to hospital in March, MRI scans showed Hayley’s heart looked like a typical child’s.

Kerry says: “From having no hope at all to being given this new drug is just amazing. There’s definitely something happening inside her body. I do feel more confident that her progeria will be cured. But more importantly she’s a fighter, which makes Hayley unique. I’m so proud of her.”

Hayley, who loves singer Justin Bieber and watching Twilight films with pals, adds: “It’s been going really well. I feel like I’m growing stronger.”

By Victoria Raymond

Extraordinary People – Hayley: The 96-Year-Old Schoolgirl, 14 June, 9pm, Five.