Teenager with condition which makes the body age at eight times the normal rate has died at 17
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.