Teacher takes steps to boost Isaac appeal

Jun 6 2008 by Gil Lightfoot, Chester Chronicle

CHESTER salsa teacher Don Stephens is turning his annual birthday celebration into a fundraiser to help baby Isaac Hughes – the boy who cannot smile.

When Don heard about one-year-old Isaac 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.

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

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

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 are raising £50,000 to kick-start a research programme into the condition. A total of £250,000 is needed to fund the research programme.

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, of Mold, are working to promote awareness of the condition and are delighted with Don’s offer of help.

Ceri said: “It is lovely of Don and Salsa Inferno to support the charity. We are getting close to the point where we can start the research and are grateful for everyone’s support.”

For details about the salsa event, visit www.salsa-inferno.co.uk or call Don on 07962 317340. For details on Moebius Syndrome, visit www.moebiusresearchtrust.org.