Hayley Okines: Girl who was born with, and strove to raise awareness of, the premature-aging condition progeria
The rarity of Okines' illness, and her family's wish to raise its profile, made her the subject of a number of documentaries
Your support helps us to tell the story
From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.
At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.
The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.
Your support makes all the difference.Progeria is a very rare congenital condition which causes its subjects to age at eight times the usual rate. Hayley Okines, who has died aged 17, had progeria and endeavoured to enjoy her limited time – and raise awareness of the disorder.
Okines was born in 1997 in Arrington, Cambridgeshire and grew up in Bexhill-on-Sea, East Sussex. Her condition was diagnosed at the age of two, when her parents were told that she would probably not live past 13.
She published two volumes of autobiography: Old Before My Time: Hayley Okines' Life with Progeria (2011) and Young at Heart: The Likes and Life of a Teenager with Progeria, which was published last month. "Having progeria is like being in a really exclusive club and once a year we all get together somewhere in the world at the Progeria Reunions," she wrote. The condition currently affects only some 100 children worldwide.
The rarity of the illness, and her family's wish to raise its profile, made her the subject of a number of documentaries. She featured on Channel 5's Extraordinary People – and in Extreme Aging: Hayley's Story, shown on Discovery Health Channel in 2009, Okines is shown coming to terms with the fact that her condition is terminal.
Dr Leslie B. Gordon, medical director of the Progeria Research Foundation, says in the foreword to Okines' most recent book: "When I first met Hayley Okines at a Sunshine Foundation Progeria Reunion in America she was two years old. In those early years, we had no real understanding of progeria... Now I see her when she participates in the Boston Children's Hospital treatment trials and she has grown into an intelligent, beautiful and amazing young woman."
She had contracted pneumonia and died at home.
Marcus Williamson
Hayley Okines, progeria campaigner: born Arrington, Cambridgeshire 3 December 1997; died Bexhill-on-Sea, East Sussex 2 April 2015.
Join our commenting forum
Join thought-provoking conversations, follow other Independent readers and see their replies
Comments