Hayley Leanne Okines (3 December 1997 – 2 April 2015) was an English girl with the extremely rare aging disease known as progeria.
She was known for spreading awareness of the condition. Although the average life expectancy for sufferers is 13 years, Hayley was part of a drug trial that had seen her surpass doctors’ predictions of her projected lifespan.
However, she died on 2 April 2015 at the age of 17 due to complications of pneumonia, having lived four years beyond doctors’ initial predictions.
In 1999, at two years old, Okines was diagnosed with progeria, a genetic disease that caused her to age eight times faster than the average person. This put her projected lifespan at thirteen years.
She frequently travelled to Boston to receive new treatments in the United States. In 2012, an autobiography of Hayley Okines was published titled Old Before My Time.
The book was co-authored by Hayley Okines, her mother Kerry Okines, and contributor Alison Stokes.
Hayley lived in Bexhill-on-Sea, East Sussex, with her mother Kerry, her father Mark, and younger siblings Louis and Ruby (neither of whom has progeria). She attended Bexhill College.
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.
When she was ten years old, Okines was featured in “Hope for Hayley”, an episode of the British 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 ageing process.
She was also featured in a report by Tara Brown on the Australian version of 60 Minutes.
Old Before My Time is Okines’ first book which 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, airfare for the family was left to them.
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 Keens saw Okines on a television special, he bicycled 1,000 miles (1,600 km) to support her.
Brian Bartlett, SRC Roadworks and Cultural Outreach Representative at Glasgow University is notable for his work with Hayley.
In December 2010, Okines met Justin Bieber after a group of people started an awareness campaign on Twitter.
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.