There are only 50 people like England’s Hayley Okines. The 17-year-old suffered from a very rare disorder called Progeria, which gave her the body of a centenarian. On Thursday, she lost the battle and died at home.
“My baby has gone somewhere better. She took her last breath in my arms at 9.39pm,” her mother, Kerry Okines, confirmed on Facebook, according to BBC News.
At the end of her life, Hayley was struck with an illness that usually fells the elderly – pneumonia. That’s because Okines’ disease, technically dubbed Hutchinson-Gilford Progeria Syndrome, made her age 10 times faster than everyone else.
The illness isn’t obvious at birth, but gradually, Progeria sufferers show the signs: baldness, dwarfism, aged skin, and elderly health problems, such as heart issues and aching joints. These children generally die by age 13, added the Telegraph.
Okines’ mom, Kerry, told the Mirror that Hayley’s life started normally – but she was a bit small. But when Hayley was still donning the clothes of a 3-month-old when she was one year, she called the doctor. Six months of tests failed to explain what was wrong with Hayley. When the diagnosis came in, the Okines family was floored, Kerry explained.
“We looked it up on the internet and were shocked. We found photos of children who looked like little elderly people. They had bald heads and one girl was wearing a wig which made her look so odd it frightened us. It said sufferers wouldn’t reach puberty and would eventually die from age-related disorders, usually before their teens. I collapsed when I was told Hayley’s life expectancy was 13 years.”
Because of an experimental treatment, Hayley defied experts and died four years after she was supposed to.
Okines did plenty with those years before she died. She worked hard to raise awareness about her incredibly rare disease, penning a book, Old Before My Time, starring in a documentary, and becoming a beacon of hope for other Progeria suffers – such as 11-year-old Ashanti Smith, added BBC News.
“She will always be loved. She is my inspiration — her and her mum.”
Following the announcement that Okines had died, people expressed their sorrow and paid tribute to her across social media.
Hayley saw the world, met celebrities – Prince Charles, Kylie Minogue, and Justin Bieber – and swam with dolphins.
“Gone from our sight, but never our memories, gone from our touch but never our hearts. We will miss you,” the Progeria Research Foundation said in Hayley’s memory.
[Photo Courtesy Facebook]