Published: Thursday, 19th June, 2008 11:52am

Quest to see son smile

A DEDICATED dad is set to ride 4,000 miles across America on a Harley Davidson in his quest to see his five-year-old son smile for the first time.

Colin Read, from Inglis Avenue, Port Seton, and his friend Iain Whyte will set off from New York later this month on two specially donated motorcycles, heading for Los Angeles.

On Monday, Colin and Iain picked up their specially designed kilts for their "Kilts Across America" trek, and little George got one too.

Said Colin: 'Being hardy Scots, we obviously wanted to wear kilts throughout the whole journey, so we"ve had two each specially made to suit the weather conditions.

'The kilts have pockets, fluorescent strips and most importantly velcro to stop them blowing up in the Arizona wind!'

The pair are aiming to raise £250,000 for ground-breaking DNA research into the rare genetic condition suffered by Colin"s son George.

George, a P1 pupil at Cockenzie Primary School, was born with Moebius Syndrome which means that the muscles in his face are paralysed.

Although he wants to smile, the corners of his mouth can"t go up at the sides.

He also can"t move his eyes from side to side and, because he can"t blink, his eyes are very sensitive to light and he has to wear dark glasses when outside.

Colin and wife Dionne are determined that five-year-old George leads as normal a life as possible.

Colin, who is a commercial photographer, explained: 'With Moebius Syndrome, some of the facial muscles are paralysed, so the person has no expression and almost looks like they"re wearing a mask.

'They can"t blink or move their eyes from side to side and, in some cases, movement of the tongue is restricted, leading to difficulties with eating and speaking. Facial expression is an international language - not to have that language can make life very different.'

A massive send-off party has been arranged at the St Andrews Bar in New York, where a silent auction will kick-off the fundraising.

Colin and Iain will set off next Saturday, June 28 and aim to travel around 300 miles a day, aiming to reach Los Angeles on July 13. Ceilidhs, barbecues and other fundraising events have been organised en-route to raise money for the research.

Moebius Syndrome is often misdiagnosed so it is difficult to give accurate figures on the number of people with the disorder. However it is estimated that between 200 and 500 people in the UK suffer from it.

There is currently no cure and very little research has been carried out into its causes. It is thought that the cause could be genetic or environmental.

The last research paper on the syndrome was published in 1976.

Colin and Dionne co-founded the Moebius Research Trust with two other parents in September 2006 in the hope of findiing the causes. Following a chance meeting with Dr Wayne Lam, a geneticist from Edinburgh"s Western General Hospital, it became clear that if enough people with Moebius Syndrome came forward for Micro Deletion testing (a form of genetic DNA testing) the answer to the cause of Moebius Syndrome was possible.

The testing requires £250,000 to fund. and the Moebius Research Trust has raised £35,000 to date.

At the moment, 76 people with Moebius Syndrome have volunteered to help with the testing. The target is to find 100 people.

If you, or someone you know, has been diagnosed with the condition, please get in touch with the Trust on 01875 819822 or go to www.moebiusresearchtrust.org

To donate to "Kilts Across America" or to sponsor the trip, visit www.kiltsacrossamerica.co.uk. Cheques and postal orders are also welcome payable to Moebius Research Trust and sent to 49 Inglis Avenue, Port Seton, East Lothian, EH32 OAG