A teenager suffering a rare genetic condition that gave her the body of a 100-year-old has died aged 17.
Hayley Okines hit the headlines three years ago when she was part of a documentary about her premature ageing condition.
She suffered from the rare disease progeria which ages the body at eight times the normal rate.
Progeria takes its name from the Greek word 'proeros', meaning prematurely old.
It involves a mutant protein called progerin that accelerates physical ageing.
There are around 74 known cases of the disease around the world and only 4 in the UK.
A
10 year old progeria child will have the appearance of an octogenarian
with symptoms including baldness, arthritis and heart problems, but the
mind of a 10 year old.
Progeria patients normally die from heart attacks or strokes at an average age of 13.
But
Hayley, from Bexhill, East Sussex, defied the odds to live four more
years and even published an autobiography about living with the
disease.
Last
night her mother Kerry posted on Facebook: 'My baby girl has gone
somewhere better. She took her last breath in my arms at 9.39pm x.'
Today,
the Progeria Research Foundation posted on its Facebook page: 'The
entire Progeria family mourns together with many as we say goodbye to
Hayley Okines, our smart, beautiful and spirited English rose, who
passed away today at age 17.
'Gone from our sight, but never our memories, gone from our touch but never our hearts. We will miss you.'
Hayley and her family had fundraised for her medical treatment and to raise public understanding of the condition.
'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.
Hayley, who turned 17 on December 3, left school last summer.
However, despite pioneering drug treatment in the US that gave her a new lease of life, she was unable to conquer the disease.
In recent weeks her health had deteriorated and she contracted pneumonia.
After being discharged yesterday she died at home last night.
Hayley's parents have previously described the heartache her condition had caused.
Her mother said: '[When she was born] she had fine blonde hair, blue eyes and her father 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 her mother took her to their GP.
Tests revealed she had a rare gene mutation called Hutchinson-Gilford progeria.
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