Hayley Okines: Girl with premature aging disease dies aged 17

03 Apr 2015

A teenager who battled the premature aging disease progeria has died aged 17.

Hayley Okines, who became known as the ‘100 year old teenager’, died last night shortly after 9.30pm.

Her mother Kerry made the announcement over Facebook, writing: ‘My baby has gone somewhere better. She took her last breath in my arms at 9.39pm.’

What is Progeria?

The disease, which is very rare, causes those affected to age eight times faster has died at the age of 17. The condition has no cure and there are only 50 known cases in the world.

The teenager, from Bexhill, in East Sussex, won the hearts of tens of thousands of people around the world after starring in a television documentary to raise awareness of the condition.

Hayley, who was not expected to live beyond her 13th birthday or puberty, also published a book on her condition called: ‘Old Before My Time’

Just like her friends, Hayley Okines is looking forward to primary school. The brave four-year-old, who loves Kylie Minogue and swimming, will sit down with her new classmates for the first time in a few weeks. But Hayley is unlikely to complete her schooling. A rare disease means she ages eight years every 12 months and is expected not to live beyond her 13th birthday. She is one of only five people in Britain, and 100 worldwide, known to suffer from the accelerated ageing condition Progeria Syndrome. At an age when other children are growing and have only just developed their milk teeth, she has lost most of her hair and has the slightest of figures. Her internal organs including her heart and lungs are at the same stage as those of someone aged 32. The condition also means that her veins show through all over her body owing to her thin skin. But she refuses to let anything get her down. 'We told her that if people stared at her on the street, she was allowed to stick her tongue out-which she does with great pleasure,' said her mother Kerry Button, 28, at the family home in Sidley, near Bexhill, East Sussex. Hayley's story will be highlighted in a TV documentary Extraordinary Lives, on Channel Five this autumn. A fund for her can be contacted on 01435 883742.  HAYLEY OKINES who suffers from progeria a genetic disorder that ages her body 8 times faster than the norm.  HAYLEY OKINES who suffers from progeria a genetic disorder that ages her body 8 times faster than the norm. Licensed by Channel 5 Broadcasting. Contact Channel 5 Stills: 020 7 550 5583/5509/5544. Free for editorial press and listings use in connection with the current broadcast of Channel 5 programmes only. This image may only be reproduced with the prior written consent of Channel 5. All rights reserved. Not for any form of advertising, internet use or in connection with the sale of any product. 

Hayley, who turned 17 on December 3 had been in hospital recently battling pneumonia on both her lungs. She returned home yesterday but died later that night.

The Progeria Research Foundation posted on its Facebook page: ‘The entire Progeria family mourns together with many as we say goodbye to Hayley Okines, our smart, beautiful and spirited English rose, who passed away today at age 17.

‘Gone from our sight, but never our memories, gone from our touch but never our hearts. We will miss you.’

The Prince of Wales meets Hayley Okines at the annual Woman’s Own Children of Courage Awards at Westminster Abbey Wednesday 11 December 2002 (Picture:EPA)

Hayley and her family had fundraised for her medical treatment and to raise public understanding of the condition, and the teenager published her autobiography at the age of 14 called Old Before My Time.

Hundreds of comments have been left on Hayley’s Facebook paying tribute to the teenager.

Ann Morrison wrote: ‘Praying for the family and friends of Hayley. God bless you Hayley. Your positive outlook and willingness to share your life’s journey with us has been very much appreciated.’

 

In 2013, Hayley’s mother spoke about finding out about her daughter’s condition for the first time.

‘She had fine blonde hair, blue eyes and (father) Mark and I were besotted with her,’ she told the Sunday People at the time. ‘At 10 months she walked for the first time – we were so proud.

‘The only concern was she was so petite and didn’t appear to be growing. But as I’m only 5ft 4ins I tried to tell myself she simply took after me.”

She took her daughter to the doctor aged 13 months old and the condition was diagnosed as progeria six months later.

 

The Prince of Wales meets Hayley Okines at the annual Woman's Own Children of Courage Awards at Westminster Abbey Wednesday 11 December 2002. Britain's bravest youngsters were honoured for their courage at the ceremony, attended by celebrity guests such as TV presenter Cat Deeley and ex-Take That singer Mark Owen. Ten children singled out for their remarkable actions and courageous stance on life received the awards at the event.  EPA PHOTO EVENING STANDARD ROTA/JEREMY SELWYN/ms...HUM...PEOPLE...LONDON...UNITED KINGDOM

Additional Info

  • Origin: Metro.co.uk