Hayley Okines finally got to meet Justin Bieber and @BiebsmeetHayley made that happen!
Schoolgirl, 12, with body of 96-year-old refuses to be beaten by aging disease by living life to the full
When Hayley Okines arrives home after a tiring day at school she would have more reason to grumble than most. The 12-year-old suffers from the rapid aging disease progeria, an incredibly rare condition that affects one in eight million people.
But despite suffering from arthritis, having little appetite and taking a cocktail of pills morning and night, the youngster refuses to be beaten.
Hayley is close to finishing her first year at secondary school - something her parents never dreamed she would be able to achieve
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 horribly 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 is one of the first progeria children to try a new class of drug called FTIs (farnesyltransferase inhibitors). These were found to reverse an abnormality in progeria cells in the laboratory and also prevented symptoms developing in progeria mice.
The family were well aware of the risks involved so early on in the trial. However Kerry, 36, said: 'At the end of the day we have got nothing to lose.'
Hayley pictured with some of her schoolfriends (let). She has grown taller since taking a pioneering drug
Hayley was treated with an FTI drug for two years that was then combined with an even more promising statin in 2009. After endless tests, MRI scans and injections her mother is cautiously optimistic about her daughter's condition.
'We haven't got official results back but Hayley's skin is a bit plumper. She has grown fine eyelashes and eye brows and has grown a bit as well,' she said.
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.'