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Hayley Okines

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Hayley Okines
Born
Hayley Leanne Okines

(1997-12-03)3 December 1997[1]
Arrington, Cambridgeshire, England[2]
Died2 April 2015(2015-04-02) (aged 17)
Bexhill-on-Sea, East Sussex, England[2]
Cause of deathPneumonia
NationalityEnglish
OccupationAuthor
Known forProgeria activism
Parents
  • Mark Okines
  • Kerry Button
Websitewww.hayleyspage.com

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.[3][4] She was known for spreading awareness of the condition. Although the average life expectancy for sufferers is 13 years, Hayley was part of a drug trial that had seen her surpass doctors' predictions of her projected lifespan. She died on 2 April 2015 at the age of 17 due to complications of pneumonia, 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.[7] She frequently travelled to Boston in the United States to receive new treatments.[8] In 2012, her autobiography, titled Old Before My Time, was published;[9][10] it was co-authored by Okines, her mother Kerry, and contributor Alison Stokes.

Television appearances

Okines was the subject of television specials in both Europe and the United States. 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.[11] In the UK, a television documentary titled Extraordinary Lives also discussed Okines, her condition, and her options.[12]

When she was 13 years old, she was featured on a French television show on 20 January 2012 called Tous Différents ("All Different", NT1). At that time she already had a physical age of 102 years.

When she was ten years old, Okines was featured in "Hope for Hayley", an episode of the British series Extraordinary People.[13] The episode concerned Okines' trips to Boston for treatment.[3]

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. Okines was discussed in relation to telomeres (short telomeres are a characteristic of progeria) and their apparent role in the ageing process.

She was also featured in a report by Tara Brown on the Australian version of 60 Minutes.[14]

Books

Old Before My Time is Okines' first and only book that chronicled her early life and struggle with progeria.[9][10] 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.[15]

Fundraisers

Although the United States' Progeria Research funded Okines's treatment, her family had to fund the air fare.[13] Some athletes were inspired by Okines to raise money for progeria research. London's Chelsea Football Club raised thousands of pounds through a charity raffle in Okines's honour. Additionally, after Steve Keens saw Okines on a television special, he bicycled 1,000 miles (1,600 km) to support her.[16]

In December 2010, Okines met Justin Bieber after a group of people started an awareness campaign on Twitter.[17][18]

"Voices of Tomorrow"

When Jane Winiberg saw a progeria television special, she and Mark Street wrote a song about Okines and other children.[19] The Kids Choir 2000, which includes Okines,[20] performed the vocals on the song, titled "Voices of Tomorrow".[21] "Life Will Find a Way" is another similar track on the album, and the profits are being donated to the Progeria Research Foundation.[20]

See also

  • Lizzie Velásquez, American woman with a non-terminal condition similar to progeria who is an author and motivational speaker.
  • Sam Berns, American male with progeria who was the only child of the doctors who established the Progeria Research Foundation.

Notes and references

  1. ^ Kerry Okines, Mark Okines (2013). "Frequently Asked Questions". Hayley Okines - My Life With Progeria. Retrieved 5 January 2015.
  2. ^ a b http://www.independent.co.uk/news/people/hayley-okines-girl-who-was-born-with-and-strove-to-raise-awareness-of-the-premature-aging-condition-10166242.html
  3. ^ a b "Inspiring People: Hayley Okines". Learning for Life. Retrieved 18 October 2009.
  4. ^ Miller, Tracy (16 April 2014). "Rare genetic disease causes rapid aging in children – but new treatments offer hope". Daily News. New York. Retrieved 7 May 2014.
  5. ^ Larimer, Sarah (3 April 2015). "Hayley Okines, a teen trapped in a 104-year-old's body, dies at 17". Washington Post. Retrieved 3 April 2015.
  6. ^ "What Is Progeria?". CheckOrphan. MediLexicon International Ltd. 13 May 2009. Retrieved 18 October 2009.
  7. ^ "Nieuwe docureeks 'Against All Odds' volgt bijzondere en inspirerende mensen". TV-Visie (in Flemish). 5 October 2009. Retrieved 18 October 2009.
  8. ^ "Girl, 9, who ages eight times faster than normal to try new drug". Daily Mail. 29 May 2007. Retrieved 18 October 2009.
  9. ^ a b Okines, Hayley; Okines, Kerry; Stokes, Alison (2011). Old Before My Time: Hayley Okines' Life with Progeria. Accent Press Ltd. ISBN 9781908192554.
  10. ^ a b Allen, Jane (8 March 2012). "Progeria Book: 'Old Before My Time'". ABC News. Retrieved 6 October 2015.
  11. ^ "Extreme Aging: Hayley's Story". Amazing Families. Discovery Health. Archived from the original on 7 March 2009. Retrieved 18 October 2009.
  12. ^ Tim Utton. "Courage of girl who ages eight years in 12 months". Daily Mail. Retrieved 18 October 2009.
  13. ^ a b Lynda Turner (16 February 2008). "Hayley Okines' battle With Progeria to be shown on Channel Five Documentary". Mid Sussex Times. Retrieved 18 October 2009.
  14. ^ http://sixtyminutes.ninemsn.com.au/article.aspx?id=7962926
  15. ^ Okines, Hayley (18 March 2015). Young at Heart. UK: Accent Press Ltd. p. 208. ISBN 9781783753260. Retrieved 6 October 2015.
  16. ^ "The Progeria Research Foundation Newsletter, December 2005" (PDF). The Progeria Research Foundation. December 2005. Retrieved 18 October 2009.
  17. ^ McCatee, Rebecca (3 April 2015). "Hayley Okines Dies at 17; Progeria Campaigner Charmed Prince Charles, Justin Bieber and More". E!. Retrieved 5 April 2015.
  18. ^ Pocklington, Rebecca (4 April 2015). "Hayley Okines: Justin Bieber pays tribute to brave teen after meeting her following huge social media campaign". The Mirror. Retrieved 5 April 2015.
  19. ^ "Shop in our Store". The Progeria Research Foundation. Retrieved 18 October 2009.
  20. ^ a b "2006: Voices of Tomorrow Now Available". The Progeria Research Foundation. 2006. Retrieved 18 October 2009. [dead link]
  21. ^ "The Kids Choir 2000". Amazon.com. Retrieved 18 October 2009.
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