Hayley Okines
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| Hayley Okines | |
|---|---|
| Born | December 3, 1997 [1] Arrington, England |
| Nationality | English |
| Known for | progeria activism |
| Website | |
| Hayley's Progeria Page | |
Hayley Okines is an English[2] girl with the rare aging disease progeria[3] who is known for spreading awareness of the condition.
Diagnosed in 1999,[4] Okines was born with progeria, a genetic disease that causes her to age eight times faster than the average person. This puts her projected lifespan to age thirteen.[5] She frequently travels from England to Boston to receive new treatments in the United States.[6]
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[edit] Television appearances
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 non terminal but with a possible cure on the horizon.[7] In England, a television documentary titled Extraordinary Lives also discusses Okines, her condition, and her options.[8]
When she was 13 years old, she was also published on a French TV show in 2012 [20/01/2012] called 'Tous Différents' (NT1). At that time she already had a physical age of 100 years.
When she was ten years old, Okines was featured in "Hope for Hayley", an episode that was part of the English series Extraordinary People.[9] 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 aging process.
She has also been featured in a report by Tara Brown on the Australian version of 60 Minutes.[10]
[edit] Fundraisers
Although the United States' Progeria Research funds Okines' treatment, airfare for the family is left to them.[9] Some athletes were inspired by Okines to raise money for progeria research. London's Chelsea Football Club raised thousands of dollars through a charity raffle in Okines' honor. Additionally, after Steve Keens saw Okines on a television special, he bicycled 1,000 miles (1,600 km) in England to support her.[11] 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.
[edit] "Voices of Tomorrow"
When Jane Winiberg saw a progeria television special, she and Mark Street wrote a song about Okines and other children.[12] The Kids Choir 2000, which includes Okines,[13] performed the vocals on the song, titled "Voices of Tomorrow".[14] "Life Will Find a Way" is another similar track on the album, and the profits are being donated to the The Progeria Research Foundation.[13]
[edit] References
- ^ Kerry Okines, Mark Okines (2009). "Frequently Asked Questions". Hayleys Progeria Page. http://www.hayleyspage.com/faq.htm. Retrieved 2009-10-18.
- ^ "Things to watch: A treatment for progeria?". Vector Online. Children's Hospital Boston. http://www.childrenshospital.org/vector/vector_spr08/treatment_for_progeria.html. Retrieved 2009-10-18.
- ^ a b "Inspiring People: Hayley Okines". Learning for Life. http://www.learningforlife.org.uk/primary/Resource/ips/okines.aspx. Retrieved 2009-10-18.
- ^ "What Is Progeria?". CheckOrphan. MediLexicon International Ltd.. 2009-05-13. http://www.checkorphan.org/grid/news/treatment/what-progeria. Retrieved 2009-10-18.
- ^ "Nieuwe docureeks 'Against All Odds' volgt bijzondere en inspirerende mensen". TV-Visie. 2009-10-05. http://www.tv-visie.be/inhoud/belgie/5oktober2009/nieuwe-docureeks-against-all-odds-volgt-bijzondere-en-inspirerende-mensen_32486/. Retrieved 2009-10-18.
- ^ "Girl, 9, who ages eight times faster than normal to try new drug". Daily Mail. 2007-05-29. http://www.dailymail.co.uk/health/article-456627/Girl-9-ages-times-faster-normal-try-new-drug.html. Retrieved 2009-10-18.
- ^ "Extreme Aging: Hayley's Story". Amazing Families. Discovery Health. http://health.discovery.com/tv/amazing-families/extreme-aging-hayleys-story.html. Retrieved 2009-10-18.
- ^ Tim Utton. "Courage of girl who ages eight years in 12 months". Daily Mail. http://www.dailymail.co.uk/health/article-132348/Courage-girl-ages-years-12-months.html. Retrieved 2009-10-18.
- ^ a b Lynda Turner (2008-02-16). "Hayley Okines' battle With Progeria to be shown on Channel Five Documentary". Mid Sussex Times. http://www.midsussextimes.co.uk/494/Hayley-Okines39-battle-With-Progeria.3785845.jp. Retrieved 2009-10-18.
- ^ http://sixtyminutes.ninemsn.com.au/article.aspx?id=7962926
- ^ "The Progeria Research Foundation Newsletter, December 2005". The Progeria Research Foundation. 2005-12. http://progeriaresearch.org/assets/files/pdf/newsletters/PRFNEWSDec05.pdf. Retrieved 2009-10-18.
- ^ "Shop in our Store". The Progeria Research Foundation. http://www.progeriaresearch.org/shop_in_our_store.html. Retrieved 2009-10-18.
- ^ a b "2006: Voices Of Tomorrow Now Available". The Progeria Research Foundation. 2006. http://progeriaresearch.org/assets/plugins/fckeditor/editor/voices_tomorrow.html. Retrieved 2009-10-18.[dead link]
- ^ "The Kids Choir 2000". Amazon.com. http://www.amazon.com/The-Kids-Choir-2000/e/B001LI9SY4/ref=ntt_mus_gen_pel. Retrieved 2009-10-18.
[edit] External links
- Kerry Okines, Mark Okines (2006). "Gallery". Hayleys Progeria Page. http://www.hayleyspage.com/gallery.htm. Retrieved 2009-10-18.
