SCOTT Kaneen has a rare disease and there is no known cure.

On May 12 last year, Gina Kaneen gave birth to their longed-for son. She and husband Jon have a daughter, Sasha, now seven, and Scott completed their family.

Gina, aged 32, said: "Everything seemed normal. We all got on with settling Scott in and carrying on with life in general. We were all over the moon with him."

But a couple of weeks later Gina noticed Scott had become very lethargic.

She said: "He was having difficulty feeding and he hadn't passed urine at all."

Jon, also aged 32, and Gina rushed their son to the GP, who made a provisional diagnosis of meningitis.

The baby was admitted to the Royal Bolton Hospital before being transferred to the neo-natal unit at St Mary's Hospital, Manchester. But en-route, Scott had a heart attack. Medics successfully resuscitated him.

Gina said: "We were frantic but the nurse with us was absolutely fantastic."

On arrival at St Mary's, doctors ruled out meningitis, but medics soon diagnosed that Scott had Ornithine Transcarbamylase Deficiency, a condition equally as devastating.

Scott's grandmother, former cardiac nurse Anne Kaneen OBE, explained the severity of the condition.

She said: "Scott has an enzyme deficiency that means he can't break down protein. The end product of protein is ammonia, which can cause brain damage."

Before his ammonia levels reduced, dcotors warned the couple their son's ventilator might have to be switched off.

But his levels dropped and, after spending a few weeks in hospital, he was allowed home.

And that's when the hard work began for Gina and Jon.

Because he can't take any liquids, Scott has a tube fitted into his stomach so he can take four different medicines, three times-a-day.

He has to eat pureed food at set times and Gina has to make sure he receives no more than 10gms of protein-a-day.

She said: "That's not as difficult to gauge as it sounds because most baby foods list the proteins on the side of the jar."

And, because Scott needs 800 fl oz of special milk each day, he's fed by a drip throughout the night.

Gina said: "We love him so much. All parents' lives revolve around their baby's needs, but ours revolve around Scott's that little bit more.

"We don't know the life expectancy of sufferers and I don't want to know. I'd rather carry on just having Scott with us."

Gina said: "Scott's not walking or talking yet but he's very alert and takes in what's happening. We don't know if or how severely brain damaged he might be but that's a bridge we'll cross when we come to it."

Scott's condition is closely monitored at the Willink biochemical genetics unit at Pendlebury Children's Hospital.

Jon and two friends are doing the Great North Run next month on October 22.

Jon said: "We'll be raising money for the unit. It's the only way I could think of showing our appreciation to a great medical team.

"We'll never forget that they saved Scott's life."

Anyone who would like to sponsor Jon and his friends in the Great North Run can contact Jon on 373392.