Specialists’ hope for Amy’s condition

Jun 3 2009 by Kevin Core, Wallasey News

SPECIALISTS from around the world have met to discuss improvements in the treatment of a rare disease which affects a Wallasey girl.

There are 18 children in the UK with Cockayne Syndrome (CS), among them Wallasey’s Amy Garton-Hughes, 17.

The disease causes premature ageing, shortened life expectancy and last week experts in its treatment gathered at the House of Lords to discuss improving treatment.

Amy’s mum Jayne Hughes said: “We had a number of specialists from around the world present, who were able to give an insight into the condition to their UK associates and to discuss the different methods of treatment and how they can also access clinical trials that can help CS sufferers.

“My daughter is part of a trial for a drug that is usually treated for Parkinson’s Disease and her symptoms, like tremors, disappeared after 10 days.

“That was two years ago, but it seems ludicrous that we had to travel to the USA for the treatment.”

You can find out more about the charity at www.amyandfriends.org