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

Jun 10 2009 by Lorna Hughes, Heswall News

BATTLING Wallasey teenager Amy Garton Hughes has become engaged to her Texan sweetheart.

It was love at first sight when Amy, 17, met Nick Jaminet, also 17, four years ago in Boston.

The couple both have the rare and debhilitating premature ageing disorder Cockayne Syndrome (CS), which affects 18 children in the UK.

At the weekend Amy and Nick joined 39 CS familes from across the world at the Village Hotel in Bromborough for the third annual meet-up organised by Amy & Friends, the charity set up by her family to help other sufferers.

Proud mums Jayne Hughes and Jennifer Jaminet say the exchange of rings will give the teenagers, who both have shortened life expectancies, an insight into a normal life experience.

Jayne said: “It was love at first sight and now they talk every week.

“When Nick saw Amy for the first time he dropped his slice of pizza! He just assumed that no-one was sitting next to her and then they just hit it off.”

The families at the Village came to Wirral from as far as South Africa, Australia, France, Germany and Spain.

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