Stephanie Holland’s granddaughter Brida was born in January with Epidermolysis Bullosa (EB) –– a genetic condition where the skin and internal body linings blister very easily, causing painful open wounds.

Poorly Brida has the worst form of EB and is not expected to live to see her first birthday –– which has prompted heartbroken grandmother Stephanie to urge folk to support an RAF endurance marathon to raise funds for the cause.

“She’s such a lovely little thing –– but she’s quite content really to say what she’s going through,” she said. “They have given her up to a year, but I don’t even think it will be that much.

“We are on an emotional rollercoaster. We have been carried along by the support of people. It is hard on all the family, but we are coping because there is such a lot of support for us. The more awareness there is the better. A lot of people don’t know the condition exists. It may force the issue of more funding for research from the Government.”

Stephanie, of Abbey Road, said daughter Stacey and her husband Cpl Damo Heartford had both been carriers of the gene which causes EB –– but were unaware they were until after Brida’s was born.

The devastated family found out there was a problem shortly after her birth because she had raw fingers –– forcing doctors to call in specialists from the world-famous Great Ormond Street Hospital, who diagnosed her with EB last month.

It means little Brida needs constant pain relief and has many dressings to cover the wounds on her body.

Added Stephanie: “You can’t pick her up and cuddle her. She can’t wear normal baby clothes because of the seams.”

Brida’s mum Stacey has to use a special bottle to feed her because of blisters in her mouth and it takes up to two hours for her nappy to be changed.

Stacey, Damo and baby Brida live at RAF Lyneham in Wiltshire, and dog handler Damo will be taking on the challenge of the gruelling six-day, 151-mile Marathon De Sable in the Sahara desert with six colleagues from the Armed Forces.

The run starts on Sunday and the team has raised more than £10,000 so far towards charity DebRA UK, which offers help and support to those with EB and carries out research into the rare condition that affects 5,000 people in the UK.

l For further information and to support the charity, log onto www.debra.org.uk or www.justgiving.com/babybrida.