Parents of sick child to raise funds and awareness (From Malvern Gazette)

Parents of sick child to raise funds and awareness

2:38pm Tuesday 9th January 2007

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PARENTS of a child with a rare genetic disorder are trying to raise awareness and funds to help others with the incurable condition.

Eleven month old Edward was born with Cornelia de Lange Syndrome (CdLS), and is among only 400 cases in the United Kingdom.

“No one knows how the disorder will progress, or how long Edward will live for,”

Rachel Davies

The disorder, caused by a random genetic alteration, means Edward may not be able to walk or talk, is underweight for his age, has trouble eating and sleeping, and needs round the clock care.

His parents Rachel and Nick Davies, of Maybank, Malvern, have had to make major changes to their lifestyle to take care for their son.

"He can't lie down, otherwise he's sick and he chokes, so we have to keep him upright at all times," Rachel explained.

"He's on constant antibiotics to prevent infections, and we need to look after him twenty-four hours a day."

The couple, who also have a three-year-old son, Ollie, said they have to take each day as it comes.

"No one knows how the disorder will progress, or how long Edward will live for," added Rachel, 31.

"The specialists don't really know either, but they have been fantastic in their support and advice, which has been invaluable."

The pair want to raise money for the CdLS foundation, to enable that support to continue.

A family friend is planning to run the London Marathon for the foundation in April and the couple are organising a disco, raffle and prize auction at the end of February.

They are looking for local businesses or individuals who are willing to donate prizes for the event, and have already received offers of a glider flight and a signed Leicester Tigers shirt.

Anyone able to make donations can contact the couple on 01684 899295.

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