Hayley Okines is a 14-year-old girl living in the body of an old woman. She suffers from Hutchinson-Gilford Progeria, a disease that, in Hayley’s words, “makes me age eight times faster than other people.”
Hayley is one of 8 million babies born each year with progeria, a disease for which there has been little hope. Until now.
Recently a new drug called lonafarnib has been tested on Hayley and others in her condition. On her website, the British teen writes about coming to American to join others in the drug’s trial.
After five years, the drug has proved to be effective to treat symptoms of progeria. The drug has been effective for improving weight, hearing ability, bone structure, and mobility of blood vessels.
While Hayley has always been an optimist, the new drug makes her even more encouraged. “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 writes on her website.
Hayley’s mother, Kerry, notes:
“Hayley was effectively a guinea pig when we started but we had nothing to lose and everything to gain. There were a lot of tests and examinations for Hayley, but it was worth it. We’ve always thought that the drug trials were helping as Hayley has put on and maintained weight, her height has increased and her blood vessels have thickened and become stronger as a result of the trial. We are so pleased with the results. The tablets won’t just help Hayley, they will hep other people too, including those with heart disease.”
Hayley was diagnosed with progeria when she was just two years old, and doctors told her parents she wouldn’t live past the age of 13.
On December 3, Hayley will turn 15 years old.
The miracle teen writes, “Living with progeria is hard because people treat you like a baby. The worst is having all the treatment and needles. I have been going to America for special treatment that we hope will cure my progeria. I know the new drugs will not make me look like other kids but they will help me to grow hair and live longer.”
She adds that when people ask her if she wishes she didn’t have the disease, Hayley says no. “It would be good to not have it, and it would be fun to go out and not get stared at and not have loads of people ask questions,” she writes. “I would rather have progeria than not have it, though. Don’t ask me why, but I wouldn’t change it.”
Those with progeria are effected by the disease physically, but their cognitive ability is not affected. In fact, those with progeria often have intelligence levels above those without the disease. Progeria occurs due to a genetic mutation which is very rarely inherited by parents or other family members.
Hayley has two younger siblings, both of whom are physically bigger than she is. Neither is effected by progeria. Early death in children such as Hayley is often caused by stroke and heart disease.
The results of the drug trial were published in the Proceedings of the Natural Academy of Sciences in September 2012. Doctors hope that the new drug will offer hope to children like Hayley.
Hayley and her mother authored a book called “Old Before My Time,” which details Hayley’s struggle with progeria.