IT must be hard enough finding out your baby has a condition that will leave him disabled for the rest of his life.

To then be told the condition is so rare that even doctors know little about it, must be soul-destroying.

This is what happened to Sally Walburn and her husband Ken nearly 15 years ago, shortly after the birth of their son Matthew.

"I had a normal pregnancy and a normal birth," explains Sally, from Langdon Hills.

"But then as a baby he just didn't develop as he should, so alarm bells started ringing."

Doctors initially thought Matthew had cerebral palsy or learning difficulties.

When he was a year old, Matthew's family still weren't told exactly what was wrong with him.

"I saw his medical notes at one point and the doctor had written down that Matthew looked like he had Happy Puppet Syndrome when he was a year old," Sally, who has two older children, explains.

"That's the non-PC term for Angelman Syndrome, although he wasn't diagnosed until he was 18 months old."

Matthew was born in Basildon Hospital in 1993.

"It was devastating to know I would have to be his carer for the rest of his life," says Sally.

"But the hospital didn't tell us anything.

"We didn't know that the condition meant Matthew would never develop speech, or that he will always have disturbed sleep or that he was likely to also be epileptic.

"We were literally given medical papers, so we had to go away and look things up in the dictionary." Angelman Syndrome is a neuro-genetic condition that affects around one in 20,000 people.

"One of the most prominent features of the condition is happiness and laughter," says Sally.

"As well as a wide-based gait - they walk a bit like a toddler, arms flexed at the elbows and a lack of development. Most sufferers can walk, although Matthew never will."

It was the smiling face and flexed arms that caused Harry Angelman to initially name the condition Happy Puppet Syndrome after he discovered it in 1965.

Revolutionary at the time, his work lay un-touched until the early 1980s when some American doctors again began to look at his research.

It was later changed to the more appropriate title of Angelman Syndrome.

"After that, so many adults who went undiagnosed suddenly had their disabilities explained," says Sally.

"Strangely, the highest incidence of Angelman's Syndrome in the UK are in Essex."

After Matthew's diagnosis in 1993, Sally and Ken were put in touch with a support group.

"It was a very negative picture that was portrayed," Sally says of the group's attitude towards the condition.

"But we ended up in the Dorchester Hospital after Matthew had an epileptic fit and were put in touch with another group.

"Through that group we got to talk to people who were in similar situations and we got some positive information out of it."

Desperate not to let other families suffer from the lack of knowledge and support they went through, Sally and Ken set about raising awareness of the condition.

Ken has completed four London marathon's to raise money and Sally spent ten years running the UK branch of the International Angelman Syndrome Org-anisation (IASO).

She is also heavily in-volved with the Angelman's Syndrome Support Edu-cation and Research Trust (ASSERT).

"There are around 500 families, incuding professionals, around the country, who come to us for advice and information," explains Sally.

"We've even got some famous supporters. Scottish novelist Ian Rankin's son, Kit, has got Angelman's Syndrome."

Sally quit her voluntary role with the IASO at the end of last year.

"I would give telephone support to other families going through what we went through," she ex-plains.

"I would help to point them in the right direction because it's a very hard thing to go through.

"Unless you're talking to someone who's been through it themselves, it's hard to know what it's like."

Sally is now using her time to raise awareness of the condition in other ways. Recognised as a minority syndrome, she is trying to forge a joint project with other minority syndrome groups such as Criduchat, to make more headway.

"Bigger charities tend to get more money," she says, highlighting the harsh reality.

She is also trying to get more Government support for local respite care organisations, without which, she says, she just wouldn't be able to cope.

"Something like Brighter Opportunities through Supported Play (BOSP) is a vital organisation," she says.

"It gives Matthew an opportunity to go out into the community, he can interact with his peer group and the kids get a break from the parents while the parents get a break from the them."

The group is currently run entirely by volunteers and financed with donations. "The county council should get a lot more involved," Sally says.