Sign up to help Amy, pleads family

Sep 13 2007 by Liam Murphy, Liverpool Daily Post

A CAMPAIGN using the Downing Street website has been set up to help a teenage girl from Wirral who is prematurely ageing.

Amy Garton-Hughes, 15, from Wallasey, has a rare genetic disorder which leaves her bent double, and losing her eyesight, hearing and teeth.

Her mother, Jayne Hughes, said doctors in the UK were unable to diagnose Amy’s painful and complicated condition.

Instead, the family raised the money to take her to America where specialists at Boston children’s hospital diagnosed a rare type of Cockayne’s syndrome.

Now Jayne is working hard to raise awareness of her daughter’s condition.

She said: “The amazing thing was when we set the petition up we got a letter from Downing Street to say there is a special part of the NHS which deals with rare syndromes – but no one had ever told us about it before.

“Our campaign is not just aimed at the public – because although they have been generous in donating money to help Amy get this treatment that won’t solve the problem.

“We want the medical profession in this country to take an interest too.”

To sign the pet- ition, go to http://petitions.pm.gov.uk/BUTTERFLYS/

To donate to the fund, go to www.just4amy.com