(Scroll down for video) A child suffering from rapid aging disease has written a book about her life experience.
When she celebrated her 14th birthday on December 3, 2011, Hayley Okines had surpassed the average life expectancy for someone born with Progeria, a rare disease that causes children to age before they reach adolescence.
Because of Progeria, the body ages eight times the normal rate, skin is thin and papery, with fragile bones and organs threatened by diseases typically associated with old age. Patients with Progeria die of heart attack or stroke at an average age of 13 years, which carried extra weight for Hayley because doctors had told her parents she had "only thirteen years to live," recalls the British teenager in a new book, "Old Before My Time: Hayley Okines Life with Progeria."
The disease, which takes its name from the Greek word "progeros" meaning prematurely old, is a mutant protein called progerin that accelerates physical aging, but leaves intact the intellect. In the book, she writes about her fantasy for her to meet pop idol Justin Bieber, who performed at a surprise 13th birthday party fostered by her Twitter followers and her attitude about school. "I hate school. It's work is meaningless," which makes it clear that she is a fairly regular teenager in most respects.
“However, I cannot help but feel different. I’m smaller than my younger siblings. I use scarves to cover my bald spot and cannot find school uniforms to fit my little body. My mom says I'm one in eight million because my condition is so rare," she said.
Hayley, of Bexhill, England, is one of the 89 children in 32 countries living with Progeria, according
to the "Find the Other 150," which is trying to identify all the approximately 150 children who have the disease.
Unlike most of them, Hayley has grown up in the spotlight, being the subject of documentaries for British television, with titles like "The girl who is older than her mother," and following the news of her participation in clinical trials at Children's Hospital of Boston and the Dana-Farber Cancer Institute.
She has numerous followers on her Facebook page and Twitter. She went swimming with dolphins in the south of France, visited the pyramids of Egypt, and met with such notables as Prince Charles.