Specialists meet to discuss treatments for the rare disorder which affects Wallasey teenager Amy Garton-Hughes

Sep 23 2009 by Lorna Hughes, Birkenhead News

SPECIALISTS from around the world have met to discuss treatments for a rare disease which affects a Wallasey teenager.

Amy Garton-Hughes, 17, mum Jayne Hughes and Mandi Elliot, a trustee for the Amy and Friends charity, visited Boston last week to attend a science conference for Cockayne Syndrome (CS), a rare and debilitating premature ageing disorder.

The event was the first of its kind and was co-sponsored by Amy and Friends and American CS support group Share and Care.

Delgates heard that the drug Prodarsan, which could slow down the ageing process and help the growth of children with CS, will begin trials later this month.

Jayne said: “The meeting was amazing – the diagnosis procedure is changing in the UK and other parts of the world thanks to Amy's story, amongst others, and the trial for treatment has finally got the go ahead.

“We are so very proud to be part of this ground-breaking research.”

Find out more about the charity at www.amyandfriends.org