We have to stay ten steps ahead of Kieran

'THIS is Mummy," six-year-old Kieran Dewar says, clutching his mum Nerina by the waist momentarily, before pointing at her stomach. "And this is her tummy."

The lively youngster then bounces off to the family sitting room to watch a television programme. Nerina watches him go, shaking her head with a smile: "He's got quite a thing about tummies at the moment," she says.

In the kitchen, her husband Stewart is busy preparing toast as a TV snack for their son. By the time he finally makes it to bed in a few hours' time, like many six-year-olds, he'll have had plenty of boisterous sprints around the house – but unlike his peers, possibly also a stressful, noisy and painful anxiety attack. It's because Kieran has Fragile X syndrome, an inherited intellectual disability which causes major problems with learning, as well as social and behavioural development.

The condition is not well-known in Britain, although it has been in the news this week as Edinburgh University researchers revealed they are a step closer to understanding how the abnormalities in the brains of those with the condition develop. Scientists have found critical phases in the brain's development while the child is still in the womb may be "mistimed", meaning communication between brain cells can be out of synch. And that in turn can result in the symptoms of Fragile X, including hyperactivity, anxiety and hypersensitivity. These are symptoms the Dewars are all too familiar with.

Stewart, 52, explains: "I remember we were at Edinburgh Airport once and Kieran started hitting his head off the floor of the departure lounge. All these people came over to see what was going on.

"I tell you, he can produce some Oscar-winning performances."

On that occasion, Nerina, 38, and Stewart were able to calm Kieran down while other adults they were travelling with asked people to stop crowding him, because blocking his personal space only heightens his anxiety.

"It's a fight or flight reaction for Kieran. Sometimes he just cannot cope with a situation," she explains.

"We carry cards with us explaining what Fragile X is and we hand them to people who are staring. Even if Kieran is in a state, he can hear us, so we do not want him growing up thinking 'I'm disabled', or 'I cannot do things'. We always try to be positive."

In their Roslin home, Kieran takes centre stage. It can be no other way.

Since he was diagnosed at 18 months with Fragile X Syndrome, after failing to reach many development milestones, life has changed dramatically for the family in order to help and support Kieran.

That means major organisation, from the moment he wakes up until the moment his head hits the pillow.

"We always have to be ten steps ahead of Kieran," Nerina smiles. "It's when he catches up there are problems."

Stuck to the side of a kitchen cupboard is a large piece of brightly coloured paper, clearly stating each day of the week with photographs of what Kieran will take part in on each. They include horse riding lessons, swimming classes, Boys' Brigade meetings and play time at home, often in the garden or on the computer.

Planning is the key to stability. If any piece of the family "jigsaw", as his parents call it, is removed or changed at the last minute, the anxiety of an unfamiliar or unforeseen situation can be too much for the youngster to deal with.

This can mean a simple trip to the supermarket is out of the question for Kieran. He cannot cope with the unknown or the sensory overload crowded and noisy places can bring.

Nerina explains: "Everything has to be done on his terms. He can obviously come across in public like a spoiled brat, but we simply have to go with the flow.

"I have seen people get mad with him, but there is no point in trying to reason with him. He doesn't understand. He cannot organise his own thoughts. It's not that he wants to hurt somebody, he just has to get out."

In a state of anxiety – or "hyper-arousal" – it's not uncommon for Kieran to lash out at his parents, hitting or punching them in a bid to vent his frustration. Either that, or he tries to do it to himself, such as repeatedly pounding his head off objects.

Stewart looks at Nerina with concern, "He often goes for her."

She smiles frankly, "It's true, you never know if you're going to get a hug, a punch or a kick, but I would rather he hurt me than take it out on himself, or somebody else.

"All of this just becomes a way of life. You will do anything for your child, you would go to the moon for them. We just have to put ourselves in his shoes, and we desperately feel for him."

Few people know much about the condition and the couple mainly educated themselves, looking online and travelling to the US where the genetic condition is better understood.

Kieran developed the condition because Nerina is a carrier of the mutated X chromosome that gives its name to the syndrome although neither she or her family knew anything about it until Kieran was born. They believe there could be as many as one in 150 female carriers, most of whom will also be oblivious to the condition.

"We're so grateful to the doctors who sent for the tests, but that's where it stopped," says Nerina. "It's terrible to think of people out there who have been diagnosed with autism instead of this – they could be helped."

Stewart smiles when his son's achievements are discussed, his brilliant ability to ride horses and swim unaided, and Nerina shows off some of the rosettes he has won in competitions. They both agree the opportunity to send him to a mainstream school, St Andrew's Primary in Gorebridge, has been one of the best chances for development he has ever had.

He attends every day and is given specialist help in a support unit with six other pupils, and joins in with the rest of school activities.

Nerina says: "It's all about giving him opportunities. He has to be part of this community and have access to normal things, he needs that. He learns by copying. Everything is very visual."

While the couple do everything they can for their son now, they admit the future is frightening. With no other family close to hand, they worry about what will happen to him when he is older and they are no longer around. Nerina bites her lip and says: "Our biggest hope for him is that he is happy."