Dancer is moved to help family’s appeal

Jun 6 2008 by Gil Lightfoot, Flintshire Chronicle

A SALSA teacher is turning his birthday celebration into a fundraiser to help a Mold baby who suffers from a rare syndrome.

When Don Stephens heard about one- year-old Isaac Hughes, who suffers from Moebius syndrome – a condition which means he will never smile, blink or show facial expression – he immediately offered to raise funds to help start a research programme.

The rarity of Isaac’s condition – he is one of only 200 known sufferers in the UK – means there is no specialist hospital consultant and no research programme currently being undertaken.

Families of sufferers across the UK have joined together via a website (www.moebiusresearchtrust.org) to raise an initial £50,000 to kick-start a research programme into the condition, which is determined by the absence of the sixth and seventh cranial nerves, which control facial expression.

Known symptoms include difficulty in chewing and swallowing, speech impediments, hearing difficulties, eye sensitivity, crossed eyes and missing limbs.

A total of £250,000 is needed to fully fund the research programme.

Don, who runs monthly Salsa Inferno parties at Clwyd Theatr Cymru and weekly salsa lessons in Buckley, is donating money raised at his party on Saturday, June 14, to the charity.

The event starts at 8.15pm and will be a mix of salsa and 70s disco music.

There will also be a guest singer, a raffle and optional 70s fancy dress.

Don said: “As soon as I heard about Isaac I wanted to help. This research is vital and the party night I’m holding is the ideal opportunity to raise funds.”

Isaac’s parents, Ceri and Philip Hughes, are working to promote awareness of the condition and are delighted with Don’s offer of help.

“It is lovely of Don and Salsa Inferno to support the charity,” said Ceri.

“We are now getting close to the point where we can start the research and are really grateful for everyone’s support.”

For more information about the salsa event, visit www.salsa-inferno.co.uk or call Don on 07962317340.