Boy's life hangs on double transplant.

Byline: By Craig Thompson

Little Stephen Carr faces a race against time for a double-transplant operation to save his life after being diagnosed with a rare disease.

His parents today told of the battle to save their sick son.

Doctors in Newcastle have just diagnosed the 22-month-old with primary hyperoxaluria, a life-threatening condition which affects just one in 120,000 children. Now Stephen's parents have been told their son must have a liver and kidney transplant if he has any chance of survival.

Mum Kerry, 28, from West Denton, Newcastle, said: "I just feel numb. It hasn't really sunk in properly yet.

"If he doesn't get on the transplant list and have these operations he will die.

"We've been walking around like zombies, just trying to understand everything that's happening."

While it has already halted Stephen's growth, the highly-dangerous condition ( caused by a missing liver enzyme ( could go on and damage the toddler's heart, bone marrow and eyes.

During the night, he is hooked up to a special machine near his bedside at the family home in Gofton Walk. While he sleeps, it pumps fluid into his little body every two hours.

By day, he is free of the machine but relies on Kerry to feed him special milk which is shipped into the family home by the case-load.

His father, also named Stephen, said: "There are tests being carried out in London at the minute, but they are taking forever and we don't have much time.

"We've been told we have to wait for these results, then wait again until Stephen's kidneys fail. He will then be put on dialysis while he waits for a transplant.

"It's so frustrating for his mum and I. We just feel useless."

Specialists from the department of paediatric nephrology at Newcastle's Royal Victoria Infirmary have been consulting doctors at Birmingham Children's Hospital about the boy's condition.

The family first became concerned about the youngster when he was just 15 months' old.

Kerry said: "He started being sick every day and always had a high temperature.

To begin with, we thought it was just a bug and took him to the doctors a few times. Then, in January, he started to turn yellow and we were told he had some kind of urinary infection."

Two months ago, after Stephen's weight dramatically plummeted, the family were referred to the RVI.

The youngster had gone off all types of food, but had started drinking a staggering four pints of milk every day.

Stephen, 33, said: "They carried out tests, but nobody seemed to know what was wrong. Then they realised his kidneys were starting to struggle, and struggle badly."

A scan revealed Stephen's kidneys were riddled with stones and doctors immediately admitted him.

The couple, who have three other children ( John, 12, Chanise, 10, and Chantelle, five ( were then told that Stephen had primary hyperoxaluria.

Kerry said: "We were just expecting the doctors to give his some medicine, a couple of paracetamol, and take him home.

"Instead, we find out he needs a double transplant and if he doesn't get it, he will die."

Because Stephen has stopped growing, at 22-months-old he is only able to move by shuffling on his bottom.

The family have also been told it is unlikely both transplants could be carried out at the same time.

Stephen said: "The way things stand, he probably wouldn't be able to survive both operations. They are talking about giving him a liver first, then his kidney.

"We just want him to get better. He's such a fantastic little boy who never complains about what's happening to him."

A massive shortage of organ donors in the region means patients like Stephen, desperately in need of a transplant, are dying.

A Chronicle-backed campaign has helped boost the number of donors agreeing to sign the NHS register by 1,814 in the past few months.

Those wanting to sign-up are urged to call the Organ Donor Line on (0845) 60 60 60.