When Hayley Okines arrives home after a serious day at school she would have more reason to complain than most. The 12-year-old suffers from the quick aging disease progeria, an extremely rare condition that affects one in eight million people.

But despite suffering from arthritis, having little hunger and intriguing a cocktail of pills morning and night, the youth refuses to be beaten.

Her mother Kerry, told the Mail Online: 'I'm so proud of Hayley. No matter what life throws at her she just gets on with it. She doesn't let her arthritis stop her and runs around with her friends and she is very good at taking her medication.'

Hayley's life story is the subject of a documentary to be broadcast on Five tonight. When she last featured in the channel's 'Extraordinary People' series in 2007 she was about to take part in a pioneering medical trial in America.

Her parents from Bexhill, East Sussex, were hideously aware that the average lifespan for a child with progeria is only 13 years old and Hayley was devastated when she lost her best friend to the disease in 2006.



Hayley was well enough to attend her local secondary school and astonished her family by how well she adapted to her new surroundings.

Kerry said: 'We were worried because of the sheer size of the school and of rough and tumble because Hayley is quite fragile. But she settled in quickly and has made a couple of new friends as well. She is particularly good at science and maths.

'She also had her first sleepovers this year and the girls enjoyed chatting and playing on the Nintendo Wii and doing all the usual girly things.'

Kerry who has two other children - Louis, 8 and Ruby, 5 - is now hoping to organise a UK reunion for children with progeria, after the annual U.S event was cancelled due to a lack of funding.

Although they have managed to raise £4,000 to host the event they are still £14,000 short of their target.

'We're desperate not to cancel the event and have even looked at getting a bank loan,' Kerry said.


'We've already had families of 18 children with progeria say they would like to attend and we're hoping that a sponsor might come forward to help.

'It means so much to the children to meet others with the same condition.'

Kerry and her husband Mark will be taking Hayley back to Boston in July for another check-up and are confident Hayley will continue to deal with whatever life throws at her.

'Hayley just gets on with her life,' Kerry said.

'She is a fighter and has achieved a great deal in a short time.'

0