Progeria syndrome being a sporadic autosomal dominant mutation, its cases are very rare..
It has been estimated that about 1 in 4,000,000 babies are born with progeria and about 1 in 20 million people in the world have this condition.
Only about 130 individuals have been diagnosed since 1886.
the story of
Hayley Leanne Okines
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.
Okines was diagnosed with progeria at the age of two,
and doctors put her projected lifespan at thirteen years
She died on 2 April 2015 at the age of 17, having
lived four years beyond doctors' initial predictions.
In 2012, her autobiography, titled Old Before My Time, was published;
it was co-authored by Okines, her mother Kerry, and contributor Alison Stokes.
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.
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.