Blue jean boy

His doting parents Doug and Sandra Morris would not change him for the world, but they know they face a lifetime of uncertainty, doubt and pain as they watch their son grow up.

Ben suffers from a rare genetic condition called Spinal Muscular Atrophy which means that messages from his brain do not reach his muscles.

The result is that his muscles could become weak and wasted through lack of use.

Ben's condition is one of a range of genetic conditions that is being researched thanks to funding from Jeans for Genes Day that takes place on Friday.

Freelance IT consultant Mr Morris, 42, of Maldwyn Close, explained: "He is just a wonderful boy. Anyone that sees him face to face cannot help but fall into those beautiful blue eyes.

"We had no idea that Ben had SMA until he was born. There are tests for it, but these are not routine. Because Sandra was 40 during her pregnancy, we had an amniocentesis test which did not show anything out of the ordinary.

"Shortly after his birth, we started to notice that he was not progressing physically like others in his peer group."

It was only after he went through a series of tests at the Oxford John Radcliffe Hospital that his parents were given the bad news.

"Before Ben arrived, we had not heard of SMA and we are not alone. But the condition affects one in 6,400 births."

Doug and Sandra were told that they were both carriers of the SMA gene, which is carried by one in 40 people.

When two carriers of the gene have children, they have a one in four chance that their child will be born with the debilitating condition.

Sandra, 42, said: "We have no idea what the future holds. The thing about SMA is that it affects different people in different ways.

"As Ben gets older, it is possible that he may need an operation to fuse his spinal chord together to help him sit up. We have been given no indication how long he may live.

"At the moment, he is just like a rag doll. SMA only affects people physically, so he is as bright as a button, which means that he will probably become very frustrated with not being able to run about like the other children. He loves music and even sings along with the Tweenies on television. We have received support from the Jennifer Trust Charity which carries out research into SMA and we are keen to encourage people to support Jeans for Genes Day.

Jeans for Genes day takes place on Friday. The annual event aims to raise cash for eight charities supporting various genetic disorders. Among them is the Jennifer Trust for Spinal Muscular Atrophy. Members of the public will be asked to pay £1 for the chance to wear their jeans into work

www.jeansforgenes.org.uk