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 Progeria is a specific type of progeroid syndrome, also known as Hutchinson–Gilford syndrome. A single gene mutation is responsible for progeria. The gene, known as lamin A (LMNA), makes a protein necessary for holding the Nucleus of the cell ...

. She was known for spreading awareness of the condition. Although the average

life expectancy Life expectancy is a statistical measure of the average time an organism is expected to live, based on the year of its birth, current age, and other demographic factors like sex. The most commonly used measure is life expectancy at birth ...

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 Boston (), officially the City of Boston, is the state capital and most populous city of the Commonwealth of Massachusetts, as well as the cultural and financial center of the New England region of the United States. It is the 24th- mo ...

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.

Television appearances

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). 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

telomere A telomere (; ) is a region of repetitive nucleotide sequences associated with specialized proteins at the ends of linear chromosomes. Although there are different architectures, telomeres, in a broad sense, are a widespread genetic feature mos ...

s (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 Tara Brown (born 14 March 1968 in Sydney, New South Wales) is an Australian television presenter and reporter. Early life and career Brown attended Charles Sturt University in Bathurst, New South Wales, graduating in 1989 with a Bachelor of Ar ...

on the Australian version of '' 60 Minutes''.

Books

Okines' first book, ''Old Before My Time'', 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 her teenage interests and her struggle with paralysis.

Fundraisers

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 Chelsea Football Club is an English professional football club based in Fulham, West London. Founded in 1905, they play their home games at Stamford Bridge. The club competes in the Premier League, the top division of English football. ...

raised thousands of pounds through a charity raffle in Okines's honour. Additionally, after Steve Keen saw Okines on a television special, he bicycled to support her. In December 2010, Okines met

Justin Bieber Justin Drew Bieber ( ; born March 1, 1994) is a Canadian singer. Bieber is recognized for his genre-melding musicianship and has played an influential role in modern-day popular music. He was discovered by American record executive Scooter ...

after a group of people started an awareness campaign on Twitter.

"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 included 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 The Progeria Research Foundation (PRF) is a non-profit organization dedicated to developing treatments and, ultimately, a cure for progeria, a congenital disorder. The Foundation was established in 1999 by the family and friends of Sam Berns, a chi ...

References

External links