Hayley Okines

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Hayley Okines
Hayley Okines.jpg
Born (1997-12-03)3 December 1997[1]
Arrington, England, United Kingdom
Died 2 April 2015(2015-04-02) (aged 17)
Nationality English
Known for Progeria activism
Parent(s) Kerry Okines
Mark Okines
Website Hayley's Progeria Page

Hayley Leanne Okines (3 December 1997 – 2 April 2015) was an English girl with the extremely rare aging disease known as progeria.[2][3] 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. However, she died on 2 April 2015 at the age of 17 due to complications of pneumonia, having lived four years beyond doctors' initial predictions.[4]

In 1999, at two years old,[5] Okines was diagnosed with progeria, a genetic disease that caused her to age eight times faster than the average person. This put her projected lifespan at thirteen years.[6] She frequently travelled to Boston to receive new treatments in the United States.[7] In 2012, an autobiography of Hayley Okines was published titled Old Before My Time.[8][9] The book was co-authored by Hayley Okines, her mother Kerry Okines, and contributor Alison Stokes.

Hayley lived in Bexhill-on-Sea, East Sussex, with her mother Kerry, her father Mark, and younger siblings Louis and Ruby (neither of whom has progeria). She attended Bexhill College.

Television appearances[edit]

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.[10] In the UK, a television documentary titled Extraordinary Lives also discussed Okines, her condition, and her options.[11]

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.[12] The episode concerned Okines' trips to Boston for treatment.[2]

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.[13]

Fundraisers[edit]

Although the United States' Progeria Research funded Okines's treatment, airfare for the family was left to them.[12] 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.[14] Brian Bartlett, SRC Roadworks and Cultural Outreach Representative at Glasgow University is notable for his work with Hayley.[1] In December 2010, Okines met Justin Bieber after a group of people started an awareness campaign on Twitter.[15][16]

"Voices of Tomorrow"[edit]

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".[19] "Life Will Find a Way" is another similar track on the album, and the profits are being donated to the Progeria Research Foundation.[18]

See also[edit]

  • Jack (1996 film)
  • 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[edit]

  1. ^ Kerry Okines, Mark Okines (2013). "Frequently Asked Questions". Hayley Okines - My Life With Progeria. Retrieved 5 January 2015. 
  2. ^ a b "Inspiring People: Hayley Okines". Learning for Life. Retrieved 18 October 2009. 
  3. ^ 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. 
  4. ^ 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. 
  5. ^ "What Is Progeria?". CheckOrphan. MediLexicon International Ltd. 13 May 2009. Retrieved 18 October 2009. 
  6. ^ "Nieuwe docureeks 'Against All Odds' volgt bijzondere en inspirerende mensen". TV-Visie (in Flemish). 5 October 2009. Retrieved 18 October 2009. 
  7. ^ "Girl, 9, who ages eight times faster than normal to try new drug". Daily Mail. 29 May 2007. Retrieved 18 October 2009. 
  8. ^ Okines, Hayley; Okines, Kerry; Stokes, Alison (2011). Old Before My Time: Hayley Okines' Life with Progeria. Accent Press Ltd. ISBN 9781908192554. 
  9. ^ http://abcnews.go.com/Health/progeria-book-time/story?id=15871149
  10. ^ "Extreme Aging: Hayley's Story". Amazing Families. Discovery Health. Archived from the original on 7 March 2009. Retrieved 18 October 2009. 
  11. ^ Tim Utton. "Courage of girl who ages eight years in 12 months". Daily Mail. Retrieved 18 October 2009. 
  12. ^ 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. 
  13. ^ http://sixtyminutes.ninemsn.com.au/article.aspx?id=7962926
  14. ^ "The Progeria Research Foundation Newsletter, December 2005" (PDF). The Progeria Research Foundation. December 2005. Retrieved 18 October 2009. 
  15. ^ McCatee, Rebecca (3 April 2015). "Hayley Okines Dies at 17; Progeria Campaigner Charmed Prince Charles, Justin Bieber and More". E!. Retrieved 5 April 2015. 
  16. ^ 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. 
  17. ^ "Shop in our Store". The Progeria Research Foundation. Retrieved 18 October 2009. 
  18. ^ a b "2006: Voices of Tomorrow Now Available". The Progeria Research Foundation. 2006. Retrieved 18 October 2009. [dead link]
  19. ^ "The Kids Choir 2000". Amazon.com. Retrieved 18 October 2009. 

External links[edit]

  • Kerry Okines, Mark Okines (2006). "Gallery". Hayleys Progeria Page. Retrieved 18 October 2009.