He has the same goals, it just takes him longer getting there

LESLYE Pierce has vivid memories of the day her youngest son was born.

She recalls the unspeakable joy of welcoming a healthy baby boy - a flicker of hope, at last, after losing a daughter. And, three hours later, the strained expression on her doctor’s face as she announced her newborn had Down’s syndrome before breaking down in the hospital room. Stunned, Leslye remembers taking the young woman in her arms, reassuring her - reassuring herself - that everything would be fine.

“She was young and she got quite upset,” says the 53-year-old from Toothill. “I put my arm around her and told her it would all be alright. Prior to Sam’s birth my little girl had died at seven months from Tracheo-Oesophageal Fistula. She had multiple heart attacks, went blind and deaf and was starved of oxygen until she died. After losing our daughter the way we did Down’s syndrome was not going to be a problem.”

“As long as Sam wasn’t going to die we could handle it,” adds the mother-of-four, turning to her 25-year-old son, who, brow furrowed in concentration and fist cocked stares at the putting green on the TV screen, ready to swing his invisible golf club.

“They told me his brain would never be fast enough to play games on the computer or use a console,” Leslye smiles to herself. “But he is better on the console than any of us.”

Sam’s solid health, ability to thrive far beyond all expectations, socialise and overcome limitations has confounded doctors since childhood.

Down's syndrome is caused by the presence of an extra chromosome in a baby’s cells. People with the genetic condition have some degree of learning disability and are born with characteristic physical features including reduced muscle tone, eyes that slant upwards and outwards, a small mouth with a protruding tongue and a flat back of the head.

While people with Down’s syndrome can be plagued by a host of disorders such as

congenital heart disease, hearing problems or be more vulnerable to infections, apart from the occasional childhood illness, Sam, who spent part of his childhood in Sweden, where he was born, grew up to be a surprisingly strong and wholesome child.

But while Leslye was blessed with a vigorous boy, unlike some parents who have to contend with a lifetime of recurring infections, health scares, critical surgery and endless hospital stays, she found herself isolated at a time when very limited support and information were available for Down’s syndrome.

She was put in touch with a small group of mothers who had recently started meeting over coffee to share their concerns, struggles, milestones and daily victories over the condition. Together, they began to reach out to healthcare workers, approached the hospital to signpost new mums to the informal support network and eventually launched a volunteer helpline. Swindon Down’s Syndrome Group was born.

“I just wanted to know what to expect,” adds Leslye. “We just wanted someone to turn to for a natter, to ask, ‘How old was your child when they got potty trained? Or when this or that happened?’ 20 years on things have changed; there’s so much information out there on the internet for young mums. But then there wasn’t. So we muddled together. And we reached out to other mums, we wanted them to know they were not alone.”

Along with members, Leslye, who acted as chair for a number of years and is now treasurer, has led many awareness campaigns and fought for increased support and education in the town.

Determined not to hold her son back or rob him of a fulfilling existence, Leslye enrolled Sam in Ruskin Junior School’s special needs unit. He was one of the first children with Down’s syndrome in Swindon to go to mainstream school.

“I knew things were going to be different for Sam,” she is keen to point out. “I was aware of that but I wanted to him to have as full a life as I could give him. I soon realised that he had the same goals. He was just going to take a little bit longer to get there.

“In many ways he was easier than my other children. He’s very placid and there are no problems with drugs, sex and rock’n’roll,” she quips. “He is lovely to have around and always has.”

Fearing he would not keep up in a fast-paced secondary school she decided to send him to Crowdys and later Uplands to ensure he received all the care and attention he needed in a small and adapted environment.

Sam went on to study life skills at Swindon College.

A cheeky chappie with a keen sense of humour, and shameless flirt - according to his mother - Sam’s development has surpassed most doctors’ predictions. “His social skills are amazing,” beams the former school special needs assistant, who had to give up work to look after Sam when he left college three years ago. “His brothers call him ‘the tart’,” she laughs. “He gets away with everything. He will pretend to be deaf so pretty women have to come closer and he can get a kiss, or he will suddenly become incapable of going down stairs so certain females help him down.

“Socially he’s a pleasure to be around. I was never sure how people would accept him, but with his personality you can’t not accept him. In 25 years we’ve only had two negative comments – I can live with that.”

Despite his weaken muscles, he is an avid swimmer and tennis player. He also enjoys rock-climbing and a good game of football with Leslye’s fiancé Jon Russell, with whom he has developed a very close bond.

But speech remains Sam’s biggest hurdle. He was never able to speak in full sentences and at the age of nine simply stopped talking altogether in school. Even today, Sam is silent – but always outgoing and warm - around strangers. He also has difficulties reading and writing.

Leslye is pondering the possibility of signing Sam up to a dedicated work programme, and allow him to gain a modicum of independence. But this is not a decision she is prepared to make quite yet. She still struggles to trust others with her son, with the small exception of her children and Jon, she admits.

“I am very protective as a mum,” she confides. “If he ever decided that he needed to live away from home, that would be something we would have to think about. But I’m more than happy to cloak over him for the rest of my life,” she fixes her gaze on Sam, lost in thought.

Life expectancy for people with Down’s syndrome has increased dramatically in recent decades with many people reaching their 60s. Leslye, however, refuses to speculate or dwell on what may or not be.

“One thing I’ve learnt is not to have too many expectations and not look too far into the future. I want him to be happy and fulfilled. There’s a lot to look forward to. We have too many adventures to have yet.”

To get in touch with Swindon Down's Syndrome Group go to www.swindondownsgroup.org.uk or call 01793 538335.

FACTFILE

• Down's syndrome is a genetic condition caused by the presence of an extra copy of chromosome 21 in a baby's cells. It leads to some level of learning disability.

• Around 775 babies are born with the condition each year in England and Wales.

• Some of the characteristic physical features of Down's Syndrome include reduced muscle tone leading to floppiness, eyes that slant upwards and outwards, a small mouth with a protruding tongue, a flat back of the head and below-average weight and length at birth.

• Everyone born with Down's syndrome will have a degree of learning disability, but the level of disability will be different for each individual.

• There is no evidence that anything done before or during pregnancy increases or decreases the risk of having a child with Down's syndrome.

• Some of the main complications associated with Down's syndrome are: hearing, vision, heart and thyroid problems, and recurrent infections, such as pneumonia.