Hayley Okines
British activist with progeria (1997–2015)
From Wikipedia, the free encyclopedia
Hayley Leanne Okines (3 December 1997 – 2 April 2015) was an English author and activist who was a sufferer of the extremely rare aging disease progeria.[3][4] She was known for spreading awareness of the condition. Although the life expectancy for those with the condition is 13 years, Okines was part of a drug trial that had seen her surpass doctors' predictions of her projected lifespan. She died on 2 April 2015 at the age of 17, having lived four years beyond doctors' initial predictions.[5]
3 December 1997[1]
Hayley Okines | |
|---|---|
| |
| Born | Hayley Leanne Okines 3 December 1997[1] Arrington, Cambridgeshire, England[2] |
| Died | 2 April 2015 (aged 17) |
Cause of death | Complications from progeria |
| Occupation | Author |
| Known for | Progeria activism |
Okines was diagnosed with progeria at the age of two,[6] and doctors put her projected lifespan at thirteen years.[7] She frequently travelled to Boston in the United States to receive new treatments. In 2012, her autobiography, titled Old Before My Time, was published;[8][9] it was co-authored by Okines, her mother Kerry, and contributor Alison Stokes.
Television appearances
Okines was the subject of television specials in both Europe and North America. 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.[10] In the UK, a television documentary titled Extraordinary Lives also discussed Okines, her condition, and her options.
When she was 13 years old, she was featured on a French television show on 20 January 2012 called Tous Différents ("All Different", NT1).[citation needed]
When she was ten years old, Okines was featured in "Hope for Hayley", an episode of the British series Extraordinary People.[11] 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 ageing process.[citation needed]
She was also featured in a report by Tara Brown on the Australian version of 60 Minutes.[12]
Books
Fundraisers
Although the United States' Progeria Research funded Okines's treatment, her family had to fund the air fare.[11] 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 Keen saw Okines on a television special, he bicycled 1,000 miles (1,600 km) to support her.[14]
In December 2010, Okines met Justin Bieber after a group of people started an awareness campaign on Twitter.[15][16]
"Voices of Tomorrow"
When Jane Winiberg saw a progeria television special, she and Mark Street wrote a song about Okines and other children.[17] The Kids Choir 2000, which included Okines,[18] performed the vocals on the song, titled "Voices of Tomorrow".[19] "Life Will Find a Way" is another similar track on the album, and the profits are being donated to the Progeria Research Foundation.[18]
See also
- Sam Berns — American male with progeria who was the only child of the doctors who established the Progeria Research Foundation.
- Lizzie Velásquez — American motivational speaker with a similar but non-terminal medical condition (Marfanoid–progeroid–lipodystrophy syndrome).
