Saturday, 4 June 2011

Hayley Okines

Hayley Okines
Born December 3, 1997 (age 13)
Arrington, England
Nationality English
Known for progeria activism
Hayley's Progeria Page
Hayley Okines is an English girl with the rare aging disease progeria who is known for spreading awareness of the condition.
Diagnosed in 1999, 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. She frequently travels from England to Boston to receive new treatments in the United States.

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 terminal but with a possible cure on the horizon. In England, a television documentary titled Extraordinary Lives also discusses Okines, her condition, and her options.
When she was ten years old, Okines was featured in "Hope for Hayley", an episode that was part of the English series Extraordinary People. The episode concerned Okines' trips to Boston for treatment.
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 the Australian version of 60 Minutes.


Although the United States' Progeria Research funds Okines' treatment, airfare for the family is left to them. 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. Brian Bartlett, SRC Roadworks and Cultural Outreach Representative at Glasgow University is notable for his work with Hayley.  On the 5th of December 2010, Hayley met Justin Bieber. This was thanks to a group of people on twitter making Justin aware of Hayley.

"Voices of Tomorrow"

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

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