Hayley Okines, Beloved Teenager Trapped In 104-Year-Old Body, Passes Away At 17
“My baby girl has gone somewhere better. She took her last breath in my arms at 9.39pm.” (Photo: Old Before My Time / Facebook)
Hayley Okines, the courageous 17-year-old from England with a rare and fatal condition that prematurely aged her body nearly eight times faster than normal, passed away Thursday night. Her mother, Kerry, posted the announcement on Facebook: “My baby girl has gone somewhere better. She took her last breath in my arms at 9.39pm x.”
Watch this video tribute to Hayley.
Hayley, who penned the autobiography Old Before My Time at the age of 14 and was known as Britain’s 100-year-old teenager (her body had aged to 104 at the time of her death), suffered from Hutchinson Gilford Progeria Syndrome, also known as HGPS or Progeria.
Hayley with other children with progeria, and posing with Justin Bieber. (Hayley Okines / Facebook)
According to the Progeria Research Foundation, this disease is caused by a mutation in the gene called LMNA (pronounced, lamin - a). Children with progeria begin to display signs of this condition, which include growth failure, loss of body fat and hair, wrinkled skin and stiff joints at around 18-24 months and eventually die of heart disease (atherosclerosis or hardening of the arteries).
While the average life span of children with this incurable condition is 14 (Hayley was told she wouldn’t make it past her 13th birthday and she lost her best friend to progeria at the age of 11), she surpassed the odds after taking part in a pioneer drug treatment in the United States. She also rose to international celebrity status after appearing in the British TV series “Extraordinary People,” which gave her and her family the opportunity to raised awareness about this disease.
(Photo: Old Before My Time / Facebook)
During her short but productive life, Hayley met Prince Charles, Kylie Minogue and Justin Bieber, as well as starred in other TV documentaries, spoke at numerous events and traveled around the world. “We decided that if she wasn’t going to live long, at least we would make her life special and pack it with wonderful memories,” her mother told the UK’s The Sunday People in 2013.
Hayley inspired others with her optimism, as well as her sheer candidness. “Sometimes people ask me if I could have three wishes would I wish I didn’t have progeria,” she wrote in her book. “And I say 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. I would rather have progeria than not have it, though. Don’t ask me why, but I wouldn’t change it.”
(Photo: Old Before My Time / Facebook)
The tributes from Hayley’s friends and fans have been pouring in over social media. The Progeria Research Foundation expressed their heartfelt words on Facebook Thursday night:
The entire Progeria family mourns together with many as we say goodbye to Hayley Okines, our smart, beautiful and spirited English Rose, who passed away today at age 17.
"Gone from our sight, but never our memories, gone from our touch but never our hearts…" We will miss you. (heart emoticon)
We share one of our favorite photos of Hayley and her mum, Kerry. Thank you all for your kind thoughts.
Hayley is survived by her parents, Kerry and Mark, and her siblings Louis and Ruby.
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