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Sunday, October 16, 2011

Young Girl With Progeria

Hayley is 13 and loves shopping, Justin Bieber, and Twitter... and she has the body of a 105-year-old woman

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.


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

Hayley is shown having trouble shopping for clothes. She says she is an expert at finding things in the children's section

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