X FACTOR judge Louis Walsh is to become the patron of Amy and Friends - a charity that supports Wirral’s Amy Garton-Hughes and other sufferers of Cockayne Syndrome.
Music mogul Louis agreed to take on the role after meeting Amy herself when she visited The X Factor after her wish came true by the When You Wish Upon A Star organisation to visit and meet the judges, contestants and presenters.
Amy, 17, was finally diagnosed with the condition in 2004 after Globe readers and other benefactors helped her to visit specialist doctors in the USA.
Cockayne Syndrome is a premature ageing disorder that leads to a shortened life expectancy. There are currently only 13 children alive in the UK.
Amy and Friends was formed to provide support to the children and their families and anyone else whose lives have been affected by the condition.
“It was a delight to meet Amy and her family at the X Factor studios,” said Louis.
“She is a lovely girl who despite everything she has gone through, is always smiling – I really connected with her.
“If I can help in any way to raise awareness of this condition, then I am happy and proud to be their patron."
Research carried out by Dr Ed Neilan, a geneticist at Children’s Hospital in Boston, Massachsetts, found the prevalence of people still living with Cockayne Syndrome is less than one in a million.
The life expectancy of patients with Cockayne Syndrome is severely reduced, with most of those affected patients dying during childhood or adolescence.
Amy’s mum Jayne Hughes, founder of Amy and Friends, said: “Having someone as well known as Louis Walsh agreeing to become our patron is extremely important to us.
“It allows us to promote the work of the charity and gain further understanding of Cockayne Syndrome and provide the support to those that needed it.
“It is rare but it is important that families and children don’t feel alone and isolated.
"We have made huge progress in working with medical and non-medical professionals to understand more. With Louis Walsh becoming patron it will allow us to support more children and promote the work that we do across the whole of the UK.”
The charity Amy and Friends was formed in 2007. It provides support to everyone affected by Cockayne Syndrome - sufferers, parents and siblings as well as those that have lost loved ones.
For further information and for details on how to donate, visit www.amyandfriends.org.
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