HE's the coolest kid on the block with a collection of shades and a rock'n'roll sneer. Little George Read has gone through more sunglasses than your average Hollywood superstar - and he's still only four.
But his dark glasses and cute "mean" expression are far from a style statement. In fact, they are the result of a mysterious medical condition that has left the youngster's features frozen in time.
For behind the four-year-old's dark glasses are
a pair of striking baby blue eyes - that never blink.
His boyish features are trapped in a stoney and unflinching gaze which hardly ever alters.
George is among only a couple of hundred people in the UK to be diagnosed with the mysterious Moebius Syndrome - a condition that affects the cranial nerves, leaving patients unable to smile, frown or blink.
No-one yet knows what causes it, but thanks to little George - who needs his dark shades to prevent the sun damaging his eyes - that could soon change. Struck by how little is known about the condition which has paralysed their son's handsome features, parents Dionne and Colin, both 42, have launched an ambitious drive to raise money for groundbreaking research which could revolutionise how the condition is treated.
Their Moebius Research Trust charity, run from their busy home, aims to raise £250,000 and track down 100 people like George willing to take part in Edinburgh-based DNA research which could help identify the causes of the condition.
Not that being unable to blink, smile or even whistle stops George enjoying himself though.
He bounces across the lounge, fresh-faced after a ride on his bike, then throws himself on to a couch and settles down to watch his favourite television programme.
Seconds later, he has picked up one of his daddy's old cameras. "Click!" he shouts, and rolls on to the floor, off to explore something else. He is brighter than the average four-year-old and likes nothing better than riding his bike and being fussed over by his big sisters, Kathryn, 15 and 13-year-old Alex.
And while he may be a typical pre-schooler now, it's a stage his parents once feared he might never reach.
George was only minutes old when his shocked father was told of medics' fears that he was suffering from a string of possible disabilities - and he was asked to think the unthinkable.
"They said they thought he might be blind, possibly deaf and that he was deformed; that he had a cleft palate... just about everything you could think of," recalls Colin, a photographer. "They even asked me how I wanted them to proceed.
"I'm not 100 per cent sure what they meant, but looking back it does sound like they were asking if I wanted to just let him go.
"That was never an option - I told them to wrap him up and take him straight to his mother."
Dionne knew something was wrong as she recovered in a daze from the birth by Caesarian section she had gone through.
"He was born and the theatre fell silent - the atmosphere changed immediately. One minute everyone was chatting and there was music playing; the next it was quiet," she says.
"The staff walked past me with George and I looked over to see these big blue eyes just staring at me. I knew that there was something wrong."
Eventually medics ruled out their original fears that George was terribly disabled. Later tests showed that he could not move his eyes from side to side. Otherwise his vision is fine.
Still, it was several days later and by sheer chance that the couple discovered just what was clinically wrong with their new baby son.
"A geneticist at the hospital, Dr Wayne Lam, had seen someone with Moebius Syndrome before and recognised the signs," explains Colin.
"That was lucky as it's very rare and some people can live for years without knowing what's wrong."
But the couple then struggled to find out more about the condition. All they could discover was that the debilitating syndrome is caused by the sixth and seventh cranial nerves in the brain failing to develop properly in the early weeks of pregnancy.
They found that in severe cases it can be fatal, and that scientists are undecided as to whether it is a genetic condition or caused by something environmental early in pregnancy.
Colin says: "It might be something in the water, in food or in the air - who knows?
He adds: "Dr Lam told us that if we could raise £250,000 and give him 100 people within three years, he could probably do enough research to find out more."
Within weeks the Reads had set the wheels in motion for their Moebius Research Trust charity. They launched a new website and drafted in a long list of people - from a lawyer to bank executives - willing to give up their precious time free to help.
Soon they had tracked down 36 people from across the country with the condition - by chance, one emerged from Newcraighall, just a few miles from their home in Inglis Avenue, Port Seton, another from West Lothian and one from Dunfermline.
"It was incredible," recalls Colin. "We couldn't believe that we had found other people so close by in the same position, and it really spurred us on to make the research happen.
"I'm a great believer in positive thought - if you focus on something you can make it happen.
"I really believe that by this time next year the money will be in place, we will have the people and the research that could change lives will be underway."
The research will focus on checking patients' DNA for clues to help identify what may have caused the two vital nerves to stop developing.
Meanwhile, advances in various other medical areas - from stem cell research to electromagnetic stimulation of the nerves - give the couple hope that one day George will blink, smile and even frown.
"He gets on very well despite his condition - and we make sure he doesn't feel singled out," says Dionne. "We let him do all the same kinds of things as other children, and we are sure he'll fit in very well when he starts primary school next year.
Still there were obvious anxieties when Dionne fell pregnant with the latest addition to the Read family, Erin, now 18 months old.
"I've been through hell trying to think of anything I did in those early weeks when I was pregnant with George and there's nothing," sighs Dionne. "When I fell pregnant with Erin I just tried my best not to think about it.
"But when I first saw her she looked so different. It was such a relief."
The family, of Inglis Avenue, are now focussing on hitting their goals to ensure the vital research can take place.
"George was written off almost as soon as he was born," says Colin. "We want to make sure that we do all we can for him and other people with this condition."
For more information visit the Moebius Research Trust website:
www.moebiusresearchtrust.org.
'IT WAS CONSTANT BULLYING, ALL THE TIME'
MOEBIUS Syndrome is incredibly rare, but the Read family have been amazed to find three other sufferers living relatively nearby, including an 11-year-old West Lothian patient, and a nine-year-old in Dunfermline.
Most surprising of all, they were contacted by a 27-year-old woman who lives just a few miles from their Portobello home, in Newcraighall.
Alesha Bone suffered years of bullying as a result of the paralysing condition which left her expressionless and affected her speech.
"As a child, having this was horrible. It was constant bullying, all the time," she recalls. "It was bad enough when it was children doing it, but it's wrong when it's adults. They would stand and stare and make negative comments."
Alesha's family encouraged her to confront her difficulties. "When we went to a shop, my mum would make me talk to the shop assistants. I didn't want to, but she said if I didn't push myself then I'd never get better. She was right."
Alesha is to take part in the research. She says: "I'm fine now because I have the skills to deal with what I have, but if the research can help someone then it's got to be worth doing."
MOEBIUS - THE FACTS
MOEBIUS Syndrome is a very rare disorder which affects a foetus in the early weeks of development. It is unclear as to whether it is a genetic condition or is the result of an environmental factor.
It affects the development of the sixth and seventh cranial nerves. This can result in eye muscle and facial paralysis, which prevents things such as blinking, lateral eye movement, and expressions such as smiling or frowning. The syndrome can also be associated with other problems leading to feeding, swallowing and choking difficulties. Moebius syndrome can also cause missing fingers, toes or webbed digits.
There is no definite cure or means of preventing Moebius syndrome, but it is sometimes possible to counteract the facial nerve paralysis by transplanting nerves and muscles from other parts of the body.
Electromagnetic treatment, which stimulates the nerves into working, is another potential option.
The full article contains 1578 words and appears in Edinburgh Evening News newspaper.
