Hayley Okines

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Hayley Okines
Born (1997-12-03) 3 December 1997 (age 16)[1]
Arrington, England, United Kingdom
Nationality English
Known for Progeria activism
Parents Kerry Okines
Mark Okines
Website
Hayley's Progeria Page

Hayley Okines is a English girl with the extremely rare aging disease known as progeria.[2][3] She is known for spreading awareness of the condition. Although the average life expectancy for sufferers is 13 years, Hayley is part of a drug trial that has seen her beat the doctors' predictions, and she is still alive and well.

Diagnosed in 1999, at 2 years old,[4] Okines was born with progeria, a genetic disease that causes her to age eight times faster than the average person. This put her projected lifespan at thirteen years.[5] She frequently travels to Boston to receive new treatments in the United States.[6] In 2012, an autobiography of Hayley Okines was published titled Old Before My Time ISBN 9781908192554.[7] The book was co-authored by Hayley Okines, her mother Kerry Okines, and contributor Alison Stokes.

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

Television appearances[edit]

Okines has been the subject of television specials both in Europe and in 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.[8] In the UK, a television documentary titled Extraordinary Lives also discusses Okines, her condition, and her options.[9]

When she was 13 years old, she was also featured on a French television show in 2012 [20/01/2012] called 'Tous Différents' (NT1) (translation: All Different). 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 that was part of the British series Extraordinary People.[10] 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 aging process.

She has also been featured in a report by Tara Brown on the Australian version of 60 Minutes.[11]

Fundraisers[edit]

Although the United States' Progeria Research funds Okines's treatment, airfare for the family is left to them.[10] 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 honor. Additionally, after Steve Keens saw Okines on a television special, he bicycled 1,000 miles (1,600 km) to support her.[12] Brian Bartlett, SRC Roadworks and Cultural Outreach Representative at Glasgow University is notable for his work with Hayley. [1] On 5 December 2010 Hayley met Justin Bieber. This was thanks to a group of people on Twitter making Justin aware of Hayley.

"Voices of Tomorrow"[edit]

When Jane Winiberg saw a progeria television special, she and Mark Street wrote a song about Okines and other children.[13] The Kids Choir 2000, which includes Okines,[14] performed the vocals on the song, titled "Voices of Tomorrow".[15] "Life Will Find a Way" is another similar track on the album, and the profits are being donated to The Progeria Research Foundation.[14]

See also[edit]

  • 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.

References[edit]

  1. ^ Kerry Okines, Mark Okines (2009). "Frequently Asked Questions". Hayleys Progeria Page. Retrieved 2009-10-18. 
  2. ^ a b "Inspiring People: Hayley Okines". Learning for Life. Retrieved 2009-10-18. 
  3. ^ Miller, Tracy (16 Apr 2014). "Rare genetic disease causes rapid aging in children — but new treatments offer hope". Daily News (New York). Retrieved 7 May 2014. 
  4. ^ "What Is Progeria?". CheckOrphan. MediLexicon International Ltd. 2009-05-13. Retrieved 2009-10-18. 
  5. ^ "Nieuwe docureeks 'Against All Odds' volgt bijzondere en inspirerende mensen". TV-Visie (in Flemish). 2009-10-05. Retrieved 2009-10-18. 
  6. ^ "Girl, 9, who ages eight times faster than normal to try new drug". Daily Mail. 2007-05-29. Retrieved 2009-10-18. 
  7. ^ http://abcnews.go.com/Health/progeria-book-time/story?id=15871149
  8. ^ "Extreme Aging: Hayley's Story". Amazing Families. Discovery Health. Archived from the original on March 7, 2009. Retrieved 2009-10-18. 
  9. ^ Tim Utton. "Courage of girl who ages eight years in 12 months". Daily Mail. Retrieved 2009-10-18. 
  10. ^ a b Lynda Turner (2008-02-16). "Hayley Okines' battle With Progeria to be shown on Channel Five Documentary". Mid Sussex Times. Retrieved 2009-10-18. 
  11. ^ http://sixtyminutes.ninemsn.com.au/article.aspx?id=7962926
  12. ^ "The Progeria Research Foundation Newsletter, December 2005". The Progeria Research Foundation. December 2005. Retrieved 2009-10-18. 
  13. ^ "Shop in our Store". The Progeria Research Foundation. Retrieved 2009-10-18. 
  14. ^ a b "2006: Voices Of Tomorrow Now Available". The Progeria Research Foundation. 2006. Retrieved 2009-10-18. [dead link]
  15. ^ "The Kids Choir 2000". Amazon.com. Retrieved 2009-10-18. 

External links[edit]

  • Kerry Okines, Mark Okines (2006). "Gallery". Hayleys Progeria Page. Retrieved 2009-10-18.