Hayley Okines became well-known three years ago when she was part of a documentary about her premature ageing condition. Hayley Okines and her family had campaigned to raise awareness of her condition A girl with a rare genetic condition which made her body age eight times faster than normal has died at … Also known as Hutchinson-Gilford Progeria Syndrome (HGPS), symptoms such as growth failure, loss of body fat and hair, aged-looking skin and stiffness of joints show up during the first year of life. A campaigner who raised awareness of progeria, a condition that causes those affected to age eight times faster, has died at the age of 17. Massachusetts Teen Dies of Rare Aging Disease. She took her last breath in my arms at 9.39 pm," Hayley's mother, Kerry Okines, wrote on her Facebook page. Hayley Okines, the British teenager whose battle with an extremely rare condition that causes rapid aging, has reportedly died at 17. She defied odds to live 4 years longer than expected and died at the age of 17. The Daily Mail reports, the average lifespan of a child with Progeria is thirteen years. She was known for spreading awareness of the condition. Hayley was one of the first participants in the ongoing progeria clinical trials. IE 11 is not supported. Hayley Okines was an English progeria patient who spread awareness of the condition. Although the average life expectancy for sufferers is 13 years, Okines was part of a drug trial that had seen her surpass doctors' predictions of her projected lifespan. She was also featured in a report by Tara Brown on the Australian version of 60 Minutes. Hayley Leanne Okines (3 December 1997 – 2 April 2015) was an English author and activist who was a sufferer of the extremely rare aging disease progeria. It didn't provide more details. In 2012, her autobiography, titled Old Before My Time, was published;[8][9] it was co-authored by Okines, her mother Kerry, and contributor Alison Stokes. [11] The episode concerned Okines' trips to Boston for treatment.[3]. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. [7] She frequently travelled to Boston in the United States to receive new treatments. The doctor's began getting concerned around Hayley's first birthday. [10] In the UK, a television documentary titled Extraordinary Lives also discussed Okines, her condition, and her options. At that time she already had a physical age of 102 years. The funeral of a girl whose rare genetic condition led her to become known as the "100-year-old teenager" has taken place. Hayley had Hutchinson-Gilford Progeria Syndrome, a disease that causes … Rest in peace, Hayley. Perhaps one of the earliest influences of progeria on popular culture occurred in the 1922 short story "The Curious Case of Benjamin Button" by F. Scott Fitzgerald (and later released as a feature film in 2008). She died on 2 April 2015 at the age of 17, having lived four years beyond doctors' initial predictions. [3][4] She was known for spreading awareness of the condition. Gonna miss you Trouble. I had the privilege of meeting her a couple of times.. She was truly a light.. Additionally, after Steve Keen saw Okines on a television special, he bicycled 1,000 miles (1,600 km) to support her. Following several months of testing, the doctors concluded that Hayley had Hutchinson-Gilford Progeria Syndrom, a disorder that causes children to age eight times faster than normal. The group's executive director Audrey Gordon praised Okines for her participation in drug trials and research that helped make progress toward treatment for the condition. Indeed, Okines was diagnosed with progeria while she was just two years old. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. LONDON (AP) — A campaigner who raised awareness of the rare genetic condition progeria, which causes those affected to age about eight times faster than average, has died at age 17. Okines was discussed in relation to telomeres (short telomeres are a characteristic of progeria) and their apparent role in the ageing process. [8][9] Her follow-up book Young At Heart followed her years as a teenager with progeria, notably with teenage-like interests and her struggle with paralysis. Hayley Okines a girl who was suffering from aging disease progeria was born on 3 December 1997 in United Kingdom. Heartbroken to hear about Hayley Okines. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday, April 2, 2015, at her home. London's Chelsea Football Club raised thousands of pounds through a charity raffle in Okines's honour. Although the average life expectancy for sufferers is 13 years, Okines was part of a drug trial that had seen her surpass doctors' predictions of her projected lifespan. A campaigner who raised awareness of the rare genetic condition progeria, which causes those affected to age about eight times faster than average, has died at age 17. The major reason behind her demise was pneumonia. LONDON (AP) — A campaigner who raised awareness of the rare genetic condition progeria, which causes those affected to age about eight times faster than average, has died at age 17. By the time Hayley was six months old, the Okines were convinced there was a problem. Popular culture. On the one hand we have these sterling examples like Jeanne, who live to a ripe old age and seem to break all the rules. Hayley was known for her progeria activism, appearing on television specials in England, France, Australia and the United States. The news of Hayley’s death comes just 15 months after it was announced Sam Burns, a boy from Foxborough, MA, had died from progeria aged 17. A campaigner who raised awareness of the rare genetic condition progeria, which causes those affected to age some eight times faster than average, has died at age 17. LONDON (AP) — A campaigner who raised awareness of the rare genetic condition progeria, which causes those affected to age about eight times faster than average, has died at age 17. Our thoughts and prayers are with the friends & family of @sunshinesirwin. When she was ten years old, Okines was featured in "Hope for Hayley", an episode of the British series Extraordinary People. She was 17. Hayley passed way on 2nd April 2015 at the age of seventeen having survived four years beyond doctor’s initial predictions. 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