— -- A teen who brought awareness and hope to those suffering from a rare genetic disease that causes premature aging has died. Heartbroken to hear about Hayley Okines. She died at the age of 17 on 2 April 2015. London's Chelsea Football Club raised thousands of pounds through a charity raffle in Okines's honour. She died on 2 April 2015 at the age of 17, having lived four years beyond doctors' initial predictions. 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 progeria, a condition that causes those affected to age eight times faster, has died at the age of 17. #hayleyokines #TWFanmilyForever. [7] She frequently travelled to Boston in the United States to receive new treatments. Hayley Okines… The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. She was 17. 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. Hayley was one of the first participants in the ongoing progeria clinical trials. Okines was discussed in relation to telomeres (short telomeres are a characteristic of progeria) and their apparent role in the ageing process. RIP xxx, Just heard the news about Hayley Okines, so heartbreaking. At age 2, she was diagnosed with progeria, a condition that causes children to age eight times faster than the average human. 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 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 a girl who was suffering from aging disease progeria was born on 3 December 1997 in United Kingdom. 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. Popular culture. 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. 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.  She is known for Progeria Activism. "Today we remember her tremendous courage and determination," the group posted on its website. 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 Leanne Okines – Died 2nd April 3 December 1997 – 2 April 2015. When she was 13 years old, she was featured on a French television show on 20 January 2012 called Tous Différents ("All Different", NT1). Okines was the subject of television specials in both Europe and the United States. Rest in peace, Hayley. 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. [11] Some athletes were inspired by Okines to raise money for progeria research. [2] [3] She was known for spreading awareness of the condition. Our thoughts and prayers are with the friends & family of @sunshinesirwin. The average life expectancy for this kind of disease is 13 years she surpassed the doctor prediction by living few more years. 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. Those affected die at an average age of 14. She suffered from the … 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. 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 Daily Mail reports, the average lifespan of a child with Progeria is thirteen years. I had the privilege of meeting her a couple of times.. She was truly a light.. Hayley Okines was an English progeria patient who spread awareness of the condition. [17] The Kids Choir 2000, which includes Okines,[18] performed the vocals on the song, titled "Voices of Tomorrow". [19] "Life Will Find a Way" is another similar track on the album, and the profits are being donated to the Progeria Research Foundation. For an optimal experience visit our site on another browser. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday, April 2, 2015, at her home. Massachusetts Teen Dies of Rare Aging Disease. She died on 2 April 2015 at the age of 17, having lived four years beyond doctors' initial predictions.[5]. Okines was diagnosed with progeria at the age of two,[6] and doctors put her projected lifespan at thirteen years. The major reason behind her demise was pneumonia. She took her last breath in my arms at 9.39 pm," Hayley's mother, Kerry Okines, wrote on her Facebook page. Gonna miss you Trouble. When she was ten years old, Okines was featured in "Hope for Hayley", an episode of the British series Extraordinary People. By the time Hayley was six months old, the Okines were convinced there was a problem. 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. Genetics Pediatrics / Children's Health [10] In the UK, a television documentary titled Extraordinary Lives also discussed Okines, her condition, and her options. Hayley Leanne Okines was an English girl with the extremely rare aging disease known as progeria. 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. [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. She was known for spreading awareness of the condition. [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 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 was born with Hutchinson-Gilford progeria, one of the world's rarest genetic conditions, which causes the body to age at eight times the … Very sad to learn that Hayley Okines has passed away.. 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 suffered from a rare genetic condition that made her age 8 times faster than a regular child. In her book "Young at Heart," she wrote: "My life with progeria is full of happiness and good memories.". One of the sweetest people I have ever met with such a big heart. [11] The episode concerned Okines' trips to Boston for treatment.[3]. The Progeria Research Foundation says the condition affects about 1 in 4 million to 8 million newborns. 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. She defied odds to live 4 years longer than expected and died at the age of 17. She was 17. Okines was diagnosed with … The funeral of a girl whose rare genetic condition led her to become known as the "100-year-old teenager" has taken place. 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). Indeed, Okines was diagnosed with progeria while she was just two years old. [14], In December 2010, Okines met Justin Bieber after a group of people started an awareness campaign on Twitter. Hundreds of tributes were swiftly posted across social media, celebrating Okines' life. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. Hayley Okines, the British teenager whose battle with an extremely rare condition that causes rapid aging, has reportedly died at 17. It didn't provide more details. At that time she already had a physical age of 102 years. She was also featured in a report by Tara Brown on the Australian version of 60 Minutes. [15][16], When Jane Winiberg saw a progeria television special, she and Mark Street wrote a song about Okines and other children. 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. Then we have the rare and extraordinary children like Hayley Okines, who died at the age of 17 because her body aged too quickly. [13], Although the United States' Progeria Research funded Okines's treatment, her family had to fund the air fare. Additionally, after Steve Keen saw Okines on a television special, he bicycled 1,000 miles (1,600 km) to support her. It did not provide more details. Check out her story. 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. [3][4] She was known for spreading awareness of the condition. The doctor's began getting concerned around Hayley's first birthday. It didn't provide more details. 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 … 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. 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. 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 … 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 Leanne Okines was an English author and activist who was a sufferer of the extremely rare aging disease progeria. 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. 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