| 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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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.[7] In England, a television documentary titled Extraordinary Lives also discusses Okines, her condition, and her options.[8]
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]
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.
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]