Hayley Okines, a teenager from Bexhill, England, with a body of a 105-year-old, who suffers a rare genetic disease called progeria characterized by premature aging symptoms and was told by doctors that she would not live longer than 13 years, celebrated her 14th birthday last December.
Progeria accelerates the aging process of the body at eight times the normal rate, and patients affected typically die from heart attacks or strokes at an average age of 13. Hayley, who has surpassed the average lifespan of progeria patients and has published a new book called "Old Before My Time: Hayley Okines' Life With Progeria”.
Hayley’s book was co-written by Hayley and her mother and she tells about her journey so far as one of the 89 progeria patients in the world.
“Mum says I am one in eight million because my condition is so rare,” Hayley writes in her book. “Sometimes people ask me if I could have three wishes, would I wish I didn’t have progeria. And I say no. My life with progeria is full of happiness and good memories. Deep inside I am no different from anyone. We are all human.”
“The easiest way to explain it is it’s like my body is a hundred years old when I am actually fourteen. But I don’t like it when people call me old, because I don’t feel like I am a hundred years old,” she explained about her condition.
“I am not worried about dying. They said the Titanic wouldn’t sink but it did, so that proves experts can be wrong and I want to prove the doctors wrong,” she said about surpassing the average life expectancy of progeria patients.
The condition, also known as Hutchinson–Gilford Progeria Syndrome, which borrows its name from the Greek word "progeros,"which means prematurely old, is caused by a mutant protein called progerin that accelerates physical aging, but mental intelligence is not affected.
The disease causes premature aging of bodily organs, and patients affected will generally have similar respiratory, cardiovascular and arthritic conditions as a person eight to 10 times their age. The genetic illness causes wrinkled skin, atherosclerosis, kidney failure, loss of eyesight, hair loss, and cardiovascular problems.
There is no known cure for the disease and about 90 percent of patients die from atherosclerosis complications like heart attack or stroke, but researchers from a study published in the Science translational Medicine journal, recently discovered a ‘forever young’ drug rapamycin actually removed the mutant progerin protein out of the cells and reversed the defects, which made the cells live longer.