She has Cockayne Syndrome – a rare genetic disorder which degenerates the body and shortens young lives.

This cruel illness has taken away Amy’s balance, her speech is deteriorating and she has signs of dementia.

But she still enjoys a busy life – listing swimming, bowling and seeing friends as her hobbies.

Jayne Hughes, from Merseyside, spent years trying to identify her daughter’s illness. Doctors were mystified and library books gave no answers.

But online searches eventually did – yielding pictures of other children with the same distinctive sunken eyes and pixie-like faces.

Jayne said: « When I found Cockayne Syndrome on the internet, there were a couple of photos of different children that all looked like her.

« So I printed them off and when my dad came round, I said ‘have a look at this’. He asked when I’d taken that picture of Amy. I said ‘actually it’s not Amy’.

« It was at that point when I thought – this is it, that’s definitely what she’s got. »

Jayne Hughes jokes that she only recently learnt to cut and paste. But she has found the internet invaluable.

Her family’s website, Amy and Friends, supports 1,500 other young people around the world who are affected by Cockayne Syndrome.

Jayne added: « If it wasn’t for the internet, I’d still be searching. Trying to find out what was wrong with Amy was like an obsession.

« I couldn’t settle or sleep and I couldn’t look after my other children properly. Without the internet I’d be lost. »

Read more: http://www.bbc.co.uk/news/health-25415587

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