Like many young teenagers, Hayley Okines is obsessed with pop star Justin Bieber, messaging her friends on Twitter and going shopping. But there is one big difference. Hayley has progeria, which means her body ages eight times quicker than normal.
She suffers from arthritis, hip problems and baldness and dreams of having long lustrous locks that she can ‘flick in the wind.’
Her life story is the subject of a ongoing documentary series for Five. When she last featured in 2010 she was starting secondary school and taking part in a pioneering medical trial in America.
Radio star: Hayley with her best friend at school before a hip problem forces her to learn from home
Check-up: Hayley is no stranger to hospitals. Her heart is currently strong thanks to the multiple medicines that she takes
A year on and she is getting to grips with being a teenager – not an easy task at the best of times.
‘It’s annoying having an old woman’s body’, she admits early on.
The episode, which she is narrating herself for the first time, shows her planning her own autobiography and writing a speech to give to experts on her condition.
‘How do you spell progeria?’ she wonders aloud, revealing just how young she is, despite all she has gone through.
‘I really should know how to spell that,’ she adds with a sheepish grin to the camera.
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Her mother Kerry, who lives with Hayley and her two other healthy children in Bexhill, told Mail Online: ‘Hayley is a typical teenager, she’s more stroppy now and has a messy bedroom. She always likes to have the last word and thinks she knows everything like most teens!’
She admitted it was hard letting go of the reins as Hayley grows up.
‘It is difficult,’ she said.
‘She obviously wants to go out and I do let her go down to the local shops and go on sleepovers.
‘She also goes to the local shopping centre with her friends but I like to be somewhere in the centre at the same time and I make sure she has her mobile on her in case she needs me.’
Hayley wearing a headscarf: The teenager now regularly wears a brunette wig
Old before my time: Hayley and her mother Kerry watch her book hit the presses
Kerry has good reason to be worried. In April this year, Hayley was told by a doctor that her hip bones were in danger of dislocating and she now has to wear an uncomfortable brace nearly 24-hours a day.
‘I don’t like the brace as it’s a bit heavy and stops me moving around as much,’ she told Mail Online.
Her mother Kerry added: ‘She hasn’t been able to go back to school since April. We were hoping she would go back but she’s had more problems with her hips.
‘They have partially slipped out even despite the brace and the doctors are now looking at the possibility of surgery and speaking to experts in America.
‘Maybe she can go back to school next year…’ she trailed off hopefully.
Despite the latest setback Hayley continues to stay positive.
‘She does online schooling which she loves. Maths, English, Science and Art. She is also doing a health and beauty course and they are designing their own salon,’ Kerry said.
The internet has opened up a whole new world for Hayley, who loves the social-networking site Twitter. It was thanks to her Twitter followers that she achieved a lifelong dream of meeting the pop singer Justin Bieber.
Justin meets Hayley: The kind-hearted pop star gave Hayley front row tickets to see his show
‘Some girls started a campaign on Twitter to get Hayley to meet Justin,’ Kerry said.
‘Justin Bieber’s people heard about it and contacted us. We arranged to meet him at a London hotel last December as a surprise for Hayley’s birthday.
‘When she saw him she just screamed and attracting attention from everyone in the hotel!’
Hayley said: ‘I remember I came down the stairs and he was just standing there. I was so surprised I just screamed and ran up to him and put my arms around him.
‘He asked me what my favourite song was but I said I didn’t have one. Then he asked what I wanted for Christmas and I said him!’
Hayley’s younger brother Louis and sister Ruby consider her to be a ‘celebrity’ because she’s been on Blue Peter and met famous people.
‘They don’t realise the bad stuff that comes with it,’ Hayley says.
She is increasingly aware that she has a terminal illness and is shown laying flowers for a family friend with progeria who died at 14.
‘We don’t sit down and talk about it but she’s had friends who have passed away and she’s aware,’ Kerry said.
‘We’d rather get on with living.’
Hayley is being lined up to take part in another U.S drug trial for Rapamicin, otherwise known as the ‘forever young drug.’
‘We were due to start trials in November, now that’s been put back to March 2012,’ Kerry said.
‘I hope the new drug works out alright and Hayley stays healthy.’
Hayley is shown having trouble shopping for clothes. She says she is an expert at finding things in the children’s section
But while they are obviously frustrated about the speed of progeria research, they continue to focus on the future.
‘We organised a reunion last year in Ashford for children with progeria and will do the same this year,’ Kerry said.
‘It takes a lot of organising and fundraising but it’s such a fantastic event. We had 16 children and their families and this year we will have have 20.’
Hayley meanwhile is excited about having just got a dog.
‘She’s a shitzu called Angel and she’s so silly – she keeps running into walls,’ Hayley said.
‘And we’re getting a chihuahua for my 14th birthday.’
Hayley has also been fitted with a real-hair wig which she now wears most days.
‘She loves it and we’ve spent a fortune getting hair straighteners and curling tongs for her!’ Kerry said.
Meanwhile the ever enterprising Hayley has decided her next project will be launching her own perfume.
‘I saw that Justin Bieber had a perfume out and I thought ‘that’s something I’d like to do.’
‘I think I’d like it to smell like vanilla, although I haven’t decided on a name.’
As her mother says, Hayley is determined to just keep on living.