Ref. 29512-38SEVEN-YEAR-OLD Alicia Webber is suffering from Cystic Fibrosis, the UK's most common life-threatening, inherited disease.

But her mother Hayley, from Ramleaze, is hoping pioneering research will enable her daughter to live a normal life.

The research is being funded by the Cystic Fibrosis Trust, which is trying to raise millions of pounds for gene therapy research.

CF affects more than 7,500 babies, children and young adults in the UK, and the average life expectancy of sufferers is just 31.

But since 1989, when the gene that causes CF was discovered, a new area of research has been opened up.

If successful, it could correct the genetic lung defect that claims 90 per cent of young CF sufferers' lives, giving sufferers a normal life expectancy.

The CF Trust, which is celebrating its 40th anniversary this year, is attempting to raise £8.8 million across the country to plough into its groundbreaking gene therapy project.

The Swindon branch has organised a fundraising fair later this month and Hayley, 29, said she hoped the event would raise awareness about the condition as well as money to find a cure.

Alicia's condition is not the first time Hayley has been touched by CF.

When Hayley was a schoolgirl one of her friends died from the disease aged 16.

She said Alicia, whose dream is to be a footballer, was still able to do what other children could do but became tired at PE very quickly and could not tolerate smoky atmospheres.

"You take one day at a time but you don't know what's going to happen," said Hayley.

"It can be hard because you don't expect your child to die before you do.

"This research could make a real difference to my daughter's life."

The Swindon fair is being held on Saturday, March 27, at the Big Top Market in the town centre from 9am to 5pm.

Attractions will include a bouncy castle, six-bed trampoline, five-a-side football goal, a raffle and prize draw. There will also be a series of car-boot-style stalls.

Tina Vogel, chairwoman of the Trust's Swindon branch, said there were 27 CS sufferers in the town.

"I can't see any better incentive to raise as much as we can than to help with research that could extend their lifespan to a normal one," she said.

"Anything we can do we will do.

Organisers have appealed for items to be donated for sale at the fair.

Anyone who can help can contact Tina on 01793 534753.

Andy Tate