A teenager who battled the premature aging disease progeria has died aged 17.
Hayley Okines, who became known as the ‘100 year old teenager’, died last night shortly after 9.30pm.
Her mother Kerry made the announcement over Facebook, writing: ‘My baby has gone somewhere better. She took her last breath in my arms at 9.39pm.’
What is Progeria?
The teenager, from Bexhill, in East Sussex, won the hearts of tens of thousands of people around the world after starring in a television documentary to raise awareness of the condition.
Hayley, who was not expected to live beyond her 13th birthday or puberty, also published a book on her condition called: ‘Old Before My Time’
Hayley, who turned 17 on December 3 had been in hospital recently battling pneumonia on both her lungs. She returned home yesterday but died later that night.
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, and the teenager published her autobiography at the age of 14 called Old Before My Time.
Hundreds of comments have been left on Hayley’s Facebook paying tribute to the teenager.
Ann Morrison wrote: ‘Praying for the family and friends of Hayley. God bless you Hayley. Your positive outlook and willingness to share your life’s journey with us has been very much appreciated.’
In 2013, Hayley’s mother spoke about finding out about her daughter’s condition for the first time.
‘She had fine blonde hair, blue eyes and (father) Mark and I were besotted with her,’ she told the Sunday People at the time. ‘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.”
She took her daughter to the doctor aged 13 months old and the condition was diagnosed as progeria six months later.