Hayley Okines

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

Hayley Okines is an English girl with the extremely rare ageing 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). She is currently attending Bexhill High School

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 January 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 ageing 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 honour. 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 18 October 2009. 
  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. ^ "What Is Progeria?". CheckOrphan. MediLexicon International Ltd. 13 May 2009. Retrieved 18 October 2009. 
  5. ^ "Nieuwe docureeks 'Against All Odds' volgt bijzondere en inspirerende mensen". TV-Visie (in Flemish). 5 October 2009. Retrieved 18 October 2009. 
  6. ^ "Girl, 9, who ages eight times faster than normal to try new drug". Daily Mail. 29 May 2007. Retrieved 18 October 2009. 
  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 7 March 2009. Retrieved 18 October 2009. 
  9. ^ Tim Utton. "Courage of girl who ages eight years in 12 months". Daily Mail. Retrieved 18 October 2009. 
  10. ^ 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. 
  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 18 October 2009. 
  13. ^ "Shop in our Store". The Progeria Research Foundation. Retrieved 18 October 2009. 
  14. ^ a b "2006: Voices of Tomorrow Now Available". The Progeria Research Foundation. 2006. Retrieved 18 October 2009. [dead link]
  15. ^ "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.