76265-04THE parents of Ben Morris have an anxious wait before they know whether he can take a drug that could help his condition.

The four-year-old has a debilitating genetic disease called Spinal Muscular Atrophy which means his brain cannot communicate with his muscles, leaving them weak and wasted.

But trials will soon begin on the drug Valproic Acid (VPA) normally used by epilepsy suffers to see whether it can help.

Ben who lives in Wyndham Road, west Swindon, with his parents Doug Morris, 44, and Sandra Young, 45, and his 16-month-old sister Emily, could be picked from a registered list of sufferers for testing.

"At the end of the day it's our only hope," said Mr Morris. "There is no cure for his condition but it would be fantastic even if it only gave him ten per cent more movement.

"We have an anxious wait. As his parents it is great to know we are on the edge of new development but it's frustrating not knowing whether he will be chosen."

About £1.3m is needed to fund the trials, which will be held in the UK and other European countries.

And Ben's parents are planning to help contribute by organising fundraising events.

Before news of the test broke, their only option for treatment was in America.

But because of Ben's poor health he would not have coped with the flight.

Now the couple will keep checking the internet for news on the trials.

"If we get the phone call we will go for it," said Mr Morris, who is a trustee for the Jennifer Trust, which supports sufferers and their families.

"If he gets accepted, he may be given a placebo drug as part of the testing procedure. Even if this happens at least he will be helping to make a contribution.

"As this is not just for Ben but for thousands of other sufferers as well."

The Bob the Builder fan, who has been the subject of a BBC documentary and attends Westlea Pre-school, was diagnosed with the condition, which affects one in 6,400 children at birth. Doctors don't expect him to live beyond early adulthood.

Even a simple cold can cause major problems. Every time Ben, who has limited movement in his hands and arms but can use an electric wheelchair, catches a bug he usually has to spend two weeks in hospital.

VPA could work by helping to make the protein which the youngster's body is missing.

To make a donation phone 0870 7743651.

Ben Payne