Hayley Okines, the British teenager whose battle with an extremely rare condition that causes rapid aging, has reportedly died at 17. At age 2, she was diagnosed with progeria, a condition that causes children to age eight times faster than the average human. She suffered from the … In her book "Young at Heart," she wrote: "My life with progeria is full of happiness and good memories.". 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's Chelsea Football Club raised thousands of pounds through a charity raffle in Okines's honour. She took her last breath in my arms at 9.39 pm," Hayley's mother, Kerry Okines, wrote on her Facebook page. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. She died on 2 April 2015 at the age of 17, having lived four years beyond doctors' initial predictions. Hayley Okines… She was 17. The Progeria Research Foundation says the condition affects about 1 in 4 million to 8 million newborns. Hayley passed way on 2nd April 2015 at the age of seventeen having survived four years beyond doctor’s initial predictions. In a statement following Hayley's death, the Progeria Research Foundation praised the teenager for her contribution to progeria research: "The entire PRF community mourns the loss of one of our shining stars, Hayley Okines. 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. 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. The average life expectancy for this kind of disease is 13 years she surpassed the doctor prediction by living few more years. Genetics Pediatrics / Children's Health RIP xxx, Just heard the news about Hayley Okines, so heartbreaking. Hayley Okines a girl who was suffering from aging disease progeria was born on 3 December 1997 in United Kingdom. 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. Hayley Okines, a teenage girl who became an inspiring advocate for those suffering from the rare, premature aging disease Progeria, has died at the age of 17. The major reason behind her demise was pneumonia. Discovery Health aired a special titled Extreme Aging: Hayley's Story, which focused on the balance of the disease being currently terminal but with a possible cure on the horizon. 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. Hayley Okines became well-known three years ago when she was part of a documentary about her premature ageing condition. 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. The doctor's began getting concerned around Hayley's first birthday. 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. RIP Hayley, I know you'll be missed by many, she inspired so many people, Okines published her autobiography, "Old Before My Time," at 14, detailing her unusual 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. Hayley Leanne Okines was an English girl with the extremely rare aging disease known as progeria. AP Photo/Progeria Research Foundation Hayley Okines, a 17-year-old from England who publicly shared her battle with the very rare premature aging disease … [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. 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. Hayley Okines was born to Kerry and Mark Okines on December 3, 1997, in Arrington, England. It didn't provide more details. 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. [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. The Daily Mail reports, the average lifespan of a child with Progeria is thirteen years. The funeral of a girl whose rare genetic condition led her to become known as the "100-year-old teenager" has taken place. Heartbroken to hear about Hayley Okines. I had the privilege of meeting her a couple of times.. She was truly a light.. Hayley was one of the first participants in the ongoing progeria clinical trials. Okines was the subject of television specials in both Europe and the United States. #hayleyokines #TWFanmilyForever. [11] Some athletes were inspired by Okines to raise money for progeria research. 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. It did not provide more details. 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. She was known for spreading awareness of the condition. She died at the age of 17 on 2 April 2015. When she was ten years old, Okines was featured in "Hope for Hayley", an episode of the British series Extraordinary People. Hayley was born with Hutchinson-Gilford progeria, one of the world's rarest genetic conditions, which causes the body to age at eight times the … Hayley Okines, who became known as the “100-year-old teenager” because of a rare genetic condition that made her age at eight times the normal rate, died Thursday in England. She died on 2 April 2015 at the age of 17, having lived four years beyond doctors' initial predictions.[5]. 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. 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. Our thoughts and prayers are with the friends & family of @sunshinesirwin. [15][16], When Jane Winiberg saw a progeria television special, she and Mark Street wrote a song about Okines and other children. [12], Old Before My Time is Okines' first and only book that chronicled her early life and struggle with progeria. Okines was discussed in relation to telomeres (short telomeres are a characteristic of progeria) and their apparent role in the ageing process. She defied odds to live 4 years longer than expected and died at the age of 17. [18], Marfanoid–progeroid–lipodystrophy syndrome, "Hayley Okines: Girl who was born with, and strove to raise awareness of, the premature-aging condition progeria", "Rare genetic disease causes rapid aging in children – but new treatments offer hope", "Hayley Okines, a teen trapped in a 104-year-old's body, dies at 17", "Nieuwe docureeks 'Against All Odds' volgt bijzondere en inspirerende mensen", "Hayley Okines' battle With Progeria to be shown on Channel Five Documentary", "The Progeria Research Foundation Newsletter, December 2005", "Hayley Okines Dies at 17; Progeria Campaigner Charmed Prince Charles, Justin Bieber and More", "Hayley Okines: Justin Bieber pays tribute to brave teen after meeting her following huge social media campaign", "Progeria Research Foundation | Meet the Kids", https://en.wikipedia.org/w/index.php?title=Hayley_Okines&oldid=992280182, Wikipedia articles with WORLDCATID identifiers, Creative Commons Attribution-ShareAlike License, This page was last edited on 4 December 2020, at 13:20. Very sad to learn that Hayley Okines has passed away.. 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. 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. Massachusetts Teen Dies of Rare Aging Disease. [2] [3] She was known for spreading awareness of the condition. One of the sweetest people I have ever met with such a big heart. 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). Additionally, after Steve Keen saw Okines on a television special, he bicycled 1,000 miles (1,600 km) to support her. [13], Although the United States' Progeria Research funded Okines's treatment, her family had to fund the air fare. -Hayley Leanne Okines – Died 2nd April 3 December 1997 – 2 April 2015. Hayley Leanne Okines was an English author and activist who was a sufferer of the extremely rare aging disease progeria. She was known for spreading awareness of the condition. Hayley Okines from Bexhill, Sussex, raised awareness of Hutchinson-Gilford Progeria Syndrome, a genetic condition that causes the body to age at eight times the normal rate. 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 … Hayley had Hutchinson-Gilford Progeria Syndrome, a disease that causes … Check out her story. Hayley, had been told she would not live past the age of 13, died on Thursday. [14], In December 2010, Okines met Justin Bieber after a group of people started an awareness campaign on Twitter. 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