Hayley Okines, who became known as the ‘100 year
old teenager’, suffered from the rare disease progeria which ages the
body at eight times the normal rate.
Progeria
patients normally die from heart attacks or strokes at an average age of
13. But Hayley 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.” Hayley
and her family had fundraised for her medical treatment and to raise
public awareness of the condition. The teenager published her
autobiography at the age of 14 called Old Before My Time where she
described her casual life, relationship with peers and she copes with a
disease.
In an interview her mother described the hell of living with the disease. She said: “She was such a perfect baby – but when she was first diagnosed with this awful disease, I honestly couldn’t see any way forward. I would wake in the morning and think of getting in the car with Hayley, driving somewhere quiet and feeding a hosepipe from the exhaust in through the window. I thought, we would both die painlessly.”
But
then there was a glimmer of hope as the family have been offered a
pioneering treatment which could have stop the ageing process and save
their daughter’s life. However, despite drug treatment that gavethe girl
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.