Hayley Leanne Okines
3 December 1997
|Died||2 April 2015 (aged 17)|
|Cause of death||Progeria|
|Known for||Progeria activism|
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. She was known for spreading awareness of the condition. Although the average life expectancy for sufferers 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.
Okines was diagnosed with progeria at the age of two, and doctors put her projected lifespan at thirteen years. She frequently travelled to Boston in the United States to receive new treatments. In 2012, her autobiography, titled Old Before My Time, was published; it was co-authored by Okines, her mother Kerry, and contributor Alison Stokes.
Okines was the subject of television specials in both Europe and 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 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). At that time she already had a physical age of 102 years.
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.
Old Before My Time is Okines' first and only book that chronicled her early life and struggle with progeria. Her follow-up book Young At Heart followed her years as a teenager with progeria, notably with teenage-like interests and her struggle with paralysis.
Although the United States' Progeria Research funded Okines's treatment, her family had to fund the air fare. 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.
"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 Progeria Research Foundation.
- Lizzie Velásquez, American woman with a non-terminal condition similar to progeria who is an author and motivational speaker (Wiedemann-Rautenstrauch syndrome).
- Sam Berns, American male with progeria who was the only child of the doctors who established the Progeria Research Foundation.
- Kerry Okines, Mark Okines (2013). "Frequently Asked Questions". Hayley Okines - My Life With Progeria. Missing or empty
- "Hayley Okines: Girl who was born with, and strove to raise awareness of, the premature-aging condition progeria". The Independent. Retrieved 3 January 2015.
- "Inspiring People: Hayley Okines". Learning for Life. Archived from the original on 24 December 2012. Retrieved 18 October 2009.
- 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.
- Larimer, Sarah (3 April 2015). "Hayley Okines, a teen trapped in a 104-year-old's body, dies at 17". Washington Post. Retrieved 3 April 2015.
- "What Is Progeria?". CheckOrphan. MediLexicon International Ltd. 13 May 2009. Archived from the original on 29 July 2012. Retrieved 18 October 2009.
- "Nieuwe docureeks 'Against All Odds' volgt bijzondere en inspirerende mensen". TV-Visie (in Dutch). 5 October 2009. Retrieved 18 October 2009.
- Okines, Hayley; Okines, Kerry; Stokes, Alison (2011). Old Before My Time: Hayley Okines' Life with Progeria. Accent Press Ltd. ISBN 9781908192554.
- Allen, Jane (8 March 2012). "Progeria Book: 'Old Before My Time'". ABC News. Retrieved 6 October 2015.
- "Extreme Aging: Hayley's Story". Amazing Families. Discovery Health. Archived from the original on 7 March 2009. Retrieved 18 October 2009.
- Lynda Turner (16 February 2008). "Hayley Okines' battle With Progeria to be shown on Channel Five Documentary". Mid Sussex Times. Retrieved 18 October 2009.
- Okines, Hayley (18 March 2015). Young at Heart. UK: Accent Press Ltd. p. 208. ISBN 9781783753260. Retrieved 6 October 2015.
- "The Progeria Research Foundation Newsletter, December 2005" (PDF). The Progeria Research Foundation. December 2005. Retrieved 18 October 2009.
- McCatee, Rebecca (3 April 2015). "Hayley Okines Dies at 17; Progeria Campaigner Charmed Prince Charles, Justin Bieber and More". E!. Retrieved 5 April 2015.
- Pocklington, Rebecca (4 April 2015). "Hayley Okines: Justin Bieber pays tribute to brave teen after meeting her following huge social media campaign". The Mirror. Retrieved 5 April 2015.
- "Shop in our Store". The Progeria Research Foundation. Retrieved 18 October 2009.
- "2006: Voices of Tomorrow Now Available". The Progeria Research Foundation. 2006. Archived from the original on 23 April 2009. Retrieved 18 October 2009.
- "The Kids Choir 2000". Retrieved 18 October 2009.