She was featured in the second part of a three-part documentary series called Make Me Live Forever, in which presenter Michael Mosley investigated a number of proposed treatments to enable humans to extend their lifespan. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday, April 2, 2015, at her home. Hayley, had been told she would not live past the age of 13, died on Thursday. Hayley Okines suffered from a rare genetic condition that made her age 8 times faster than a regular child. 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. [14], In December 2010, Okines met Justin Bieber after a group of people started an awareness campaign on Twitter. [3][4] She was known for spreading awareness of the condition. 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. The doctor's began getting concerned around Hayley's first birthday. Additionally, after Steve Keen saw Okines on a television special, he bicycled 1,000 miles (1,600 km) to support her. Very sad to learn that Hayley Okines has passed away.. It didn't provide more details. 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. 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. She was 17. It did not provide more details. -Hayley Leanne Okines – Died 2nd April 3 December 1997 – 2 April 2015. Hayley Leanne Okines was an English girl with the extremely rare aging disease known as progeria. Hayley Okines was an English progeria patient who spread awareness of the condition. Hayley Leanne Okines was an English author and activist who was a sufferer of the extremely rare aging disease progeria. Hayley of East Sussex, England, who is pictured here with her mother, Kerry, was diagnosed at age two with progeria, a rare condition which causes humans to age up to eight times faster than normal -- as a result, doctors say that she had the body of a 104-year-old woman when she died. Our thoughts and prayers are with the friends & family of @sunshinesirwin. 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. Hayley was one of the first participants in the ongoing progeria clinical trials. — -- A teen who brought awareness and hope to those suffering from a rare genetic disease that causes premature aging has died. Hayley Okines, the British teenager whose battle with an extremely rare condition that causes rapid aging, has reportedly died at 17. #hayleyokines #TWFanmilyForever. She died on 2 April 2015 at the age of 17, having lived four years beyond doctors' initial predictions. She suffered from the … It didn't provide more details. 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. The Progeria Research Foundation says the condition affects about 1 in 4 million to 8 million newborns. Indeed, Okines was diagnosed with progeria while she was just two years old. The funeral of a girl whose rare genetic condition led her to become known as the "100-year-old teenager" has taken place. Popular culture. 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 … Gonna miss you Trouble. I had the privilege of meeting her a couple of times.. She was truly a light.. 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. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. By the time Hayley was six months old, the Okines were convinced there was a problem. In this photo provided by the Progeria Research Foundation on Friday, April 3, 2015, Hayley Okines, right, talks during an interview with her mother Kerry. 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. When she was ten years old, Okines was featured in "Hope for Hayley", an episode of the British series Extraordinary People. Okines was diagnosed with progeria at the age of two,[6] and doctors put her projected lifespan at thirteen years. In her book "Young at Heart," she wrote: "My life with progeria is full of happiness and good memories.". [11] The episode concerned Okines' trips to Boston for treatment.[3]. Hayley passed way on 2nd April 2015 at the age of seventeen having survived four years beyond doctor’s initial predictions. At age 2, she was diagnosed with progeria, a condition that causes children to age eight times faster than the average human. Those affected die at an average age of 14. She defied odds to live 4 years longer than expected and died at the age of 17. Hayley had Hutchinson-Gilford Progeria Syndrome, a disease that causes … The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. Rest in peace, Hayley. 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 known for spreading awareness of the condition. Hayley was known for her progeria activism, appearing on television specials in England, France, Australia and the United States. For an optimal experience visit our site on another browser. Hayley Okines was born to Kerry and Mark Okines on December 3, 1997, in Arrington, England. [13], Although the United States' Progeria Research funded Okines's treatment, her family had to fund the air fare. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. 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. Check out her story. London's Chelsea Football Club raised thousands of pounds through a charity raffle in Okines's honour. The major reason behind her demise was pneumonia. 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 was 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. 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. Progeria sufferer Hayley Okines dies, aged 17 The teenager was trapped in the ‘body of a 100-year-old’, due to a rapid ageing disease. 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. At that time she already had a physical age of 102 years. 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. Hayley Okines, 17, died … IE 11 is not supported. "Today we remember her tremendous courage and determination," the group posted on its website. [15][16], When Jane Winiberg saw a progeria television special, she and Mark Street wrote a song about Okines and other children. [17] The Kids Choir 2000, which includes Okines,[18] performed the vocals on the song, titled "Voices of Tomorrow". Okines was the subject of television specials in both Europe and the United States. 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 U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. 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. [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. ] in the ongoing progeria clinical trials is thirteen years at that time she already had a physical age 17... 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