This is Ben Earnshaw.

Doctors gave him three months to live when he was diagnosed with the rare liver disease Alagille syndrome.

He is now 16 months old and his parents are raising cash to fly to the United States to discover more about the disease.

Ben has spent most of his life in specialist hospitals receiving treatment and having operations on his heart and stomach. Now parents Rebecca and Michael Earnshaw, of Felstead Close, Colchester, want to fly to Milwaukie, Oregon, in July to meet medical experts holding the world's first symposium on the syndrome.

The four-day symposium will discuss the latest treatments including giving blood for future gene mapping research.

Anyone who wants to help the Earnshaws can call 01206 514117.

Ben's condition is made worse because he has blood vessel and gastric problems plus a hole in the heart. His spine, kidneys and eyes are also affected.

Staff at Colchester General Hospital and Clacton Hospital, where Mr Earnshaw works as a radiographer, are helping with a cake sale and raffle to help the couple reach their target of £2,000.

Mr Earnshaw, 33, said: "Considering he's running on two thirds the oxygen of a normal baby and being tube fed, he's quite a happy little chap, but he is not well enough to fly because of his heart."

Ben can't go to playgroup because of the risk of infection and doctors say he will only be fit enough for a liver transplant if the disease stabilises and his heart lasts out.

"He has to last out until he is four. I guess he really needs a liver, lung and heart transplant," admitted Mr Earnshaw, 31.

Mrs Earnshaw, who works as a nurse, said "Ben is living with a time-bomb. It's been a rough ride for him, we need to get over there."

The couple's other children, Christopher, six, and Daniel, four, are unaffected by the disease.

Devastating disease - Ben Earnshaw with mum Rebecc

Picture: STEVE BRADING Fact file

The syndrome is genetic and results from a fault on chromosome number 22

The bile ducts which take bile away from the liver are fewer and smaller

It is the second most common cause of liver and bile duct abnormalities in children

One in 70,000 children a year is affected with variable severity

The disease affects liver, kidneys, heart and can hinder growth and development

Children can be treated but transplant is often the final option.

Converted for the new archive on 19 November 2001. Some images and formatting may have been lost in the conversion.