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| Hayley and family |
Hayley Okines , who suffered with premature ageing disease progeria, was told she would not live past the age if 13.
But she pushed on with life courageously and at the age of 14 published her autobiography, called Old Before my Time.
However, despite pioneering drug treatment in the US that gave her a new lease of life, she was unable to conquer the disease.
Her mother Kerry Okines posted on Facebook tonight: "My baby girl has gone somewhere better. She took her last breath in my arms at 9.39pm x."
Hayley won the hearts of millions when her courageous battle against the cruel disease was featured in a series of TV documentaries.
The incurable disorder ages her eight times faster than normal, and the teenager - from Bexhill, East Sussex - was left with a 104-year-old’s body.
Only around 50 known cases exist on the planet and doctors had warned Hayley’s mum Kerry and dad Mark their daughter would probably die before reaching puberty.
Hayley, who turned 17 on December 3, left school on in the summer of 2014 and started college the following September.
However, she had recently been in hospital where she battled pneumonia on both lungs and though she returned home on Thursday, April 2, Hayley passed away later the same night.
When Hayley's family spoke to our sister paper The Sunday People back in 2013 they recalled the difficulty of discovering their daughter's illness, following her birth in 1997.
Her mum Kerry said: “She had fine blonde hair, blue eyes and (father) Mark and I were besotted with her.
“At 10 months she walked for the first time – we were so proud.
“The only concern was she was so petite and didn’t appear to be growing.
“But as I’m only 5ft 4ins I tried to tell myself she simply took after me.”
At 13 months, Hayley still wore clothes for a three-month-old, so Kerry took her to their GP – who called in a specialist.
Six months of exhaustive tests failed to find a cause – until a biopsy revealed her skin had an alarming lack of elasticity.
Kerry recalled: “A consultant said they were investigating a rare gene mutation called Hutchinson-Gilford progeria.
“We looked it up on the internet and were shocked. We found photos of children who looked like little elderly people.
“They had bald heads and one girl was wearing a wig which made her look so odd it frightened us.
“It said sufferers wouldn’t reach puberty and would eventually die from age-related disorders, usually before their teens.”
A fortnight later – in September 1999 – the consultant confirmed progeria.
Kerry said: “I collapsed when I was told Hayley’s life expectancy was 13 years.
“Mark and I went into emotional freefall and would sit up till 3am asking ‘Why us?’
“We were on anti-depressants struggling to cope with the enormity of it and grieving for the loss of our perfect daughter.”
Their local community was so touched by Hayley’s plight they raised thousands of pounds to pay for her to go to Disneyland in California. And the couple – who went on to have healthy babies Louis and Ruby – were determined to make every last minute with Hayley count.
Kerry said: “We decided that if she wasn’t going to live long, at least we would make her life special and pack it with wonderful memories.
“So she’s been swimming with dolphins, travelled all over the world, met Prince Charles, Kylie Minogue and Justin Bieber and been in several TV documentaries.
“She's often instantly recognisable and has mini-celebrity status.”
Then in April 2007 the family got a glimmer of hope.
Kerry said: “We received a letter from doctors in the States asking if Hayley would like to take part in the trial of a ground-breaking new drug that might reverse the ageing process – or even just halt it. This new drug could have far-reaching ramifications for the wider population as a miracle anti-ageing pill.
“But it had never been used on children – only on mice – and being accepted on to the trial meant signing a disclaimer as no one knew what the side-effects might be.
“It was a difficult choice – but Hayley decided it was her only option to give her the chance to live longer.”
The decision marked the start of a three-year rollercoaster ride.
Kerry said: “For the first 16 weeks Hayley was so poorly she could barely lift her head off the pillow and Mark and I sometimes wondered if it was worth it.
“But her body seemed to adapt to it and since then she’s got better and better.
“The most difficult part is Hayley has the mind of a normal 13-year-old girl locked in an old person’s body.
“Someone else has to get her a drink as she’s too small to reach taps by herself.
“And buying fashionable clothes is tough because she still wears clothes for a five-year-old.
“She has plenty of friends but it’s hard as they develop and she doesn’t.”
Kerry added: “I want Hayley to have as normal a life as possible but I can’t help worrying she’ll take a turn for the worse.
“Even though she now appears so well, my first waking thought is always, ‘Will this be our last day with Hayley?’ and at night, ‘Was this day her last?’”
But brave Hayley doesn’t share her mum’s fears. She said: “I don’t think about dying and just enjoy life.
“In many ways I feel I’ve been lucky. Because of this I’ve met more people and done more than many do in a lifetime.”
That summer, Hayley even organised the annual reunion for the 16 European families affected by progeria.
She said proudly: “It was the first time it was ever held in the UK and it was an amazing success.
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