Cockayne Syndrome sufferer Amy Garton Hughes, from Wallasey, gets engaged to Texan sweetheart

Jun 10 2009 by Lorna Hughes, Birkenhead News

Doctors from France and Boston Children’s Hospital were also on hand to answer questions.

Jennifer, who lives in Royse City in Texas State, said: “Amy and Nick have a long-term friendship and relationship.

“When they saw each other for the first time it seemed like they knew what the other one was thinking.

“There’s a special understanding between them.”

Jayne added: “There’s so much support and the weekend was fantastic.

“The aim was to bring together families who have children with Cockayne Syndrome and those who have lost children, because we can all learn from each other.

“They have got a short life expenctancy so we’re trying to give them as much as we can.

“We’re very proud parents!”

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