Hayley Okines, a teenager suffering from a rare condition that makes her age rapidly, has defied all odds by reaching her 14th birthday.
Miss Okines was told by medics she was unlikely to live beyond her 13th birthday but the determined teen has lived to blow out the candles at her 14th birthday party and has even written an autobiography to share her story.
The fourteen year old suffers from the extremely rare genetic condition, progeria, a disease that accelerates the ageing process, making a child’s body grow up to '100 years old' before they reach their teens.
The book, Old Before My Time, was co-written by Hayley and her mother and tells the moving story of her journey so far as one of 89 progeria sufferers in the world.
“Mum says I am one in eight million because my condition is so rare,” Hayley explains 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.”
Explaining her condition, Hayley says: “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.”
Talking about surpassing her short life expectancy, Hayley says: “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.”
Hayley has spoken out about her condition in a TV documentary called The Girl Who Is Older Than Her Mother and World’s Oldest Teenager: Extraordinary People.
Since her condition hit the public domain, Hayley has traveled the world raising awareness about progeria and supports the Find the Other 150 campaign which is aimed to unite other children with progeria so they receive the treatment they need.
Progeria, or Hutchinson Gilford Progeria Syndrome (HGPS), is a rare genetic illness caused by a mutant protein in the body called progerin. The illness causes body organs to prematurely age, meaning a child will have similar respiratory, cardiovascular and arthritic conditions as a person eight to 10 times their age.
Around the world, there are only 89 known cases of progeria in 32 countries. The condition affects one in every 8 million babies born worldwide.
Progeria signs start to show at around 18 to 24 months with lack of growth, loss of body fat and hair, aged-looking skin, stiffness of joints and hip dislocation being some of the common physical signs. Sadly, children with Progeria have an average life expectancy of 13 and usually die of atherosclerosis (heart disease).
Although there isn’t a cure for progeria, scientists have discovered a potential life-enhancing treatment, which could provide hope for those with the disease.
Last year, researchers from Harvard Medical School discovered a ‘forever young’ drug called rapamycin and studied the effect it had on the skin cells of three children with progeria.
They found that the treatment flushed the mutant progerin protein out of the cells and reversed the defects, making the cells live longer as a result. The study, published in the Science Translational Medicine journal, added that they hoped to run trials on children with HGPS.
Other treatment for HGPS is being trialed on two girls with the condition in Boston, which involves adding everolimus to the body, which is believed to also halt the progerin protein.