Isla's story

Young Isla has featured in DebRA fundraising case studies since she was a baby.

The photo of her at 13 months old with a raw and painful blistered cheek graphically showed the world how cruel Recessive Dystrophic EB is and the suffering it causes. 

Isla is now two and a half but her EB is no less an adversary. Rachael, Isla's mum tells us: "Most of the skin on Isla's body is affected by her EB and has blistered at some time. She has a small area of skin across her back which has remained intact but that's about all. It's difficult for Isla to resist scratching as her skin itches all the time, but of course this just makes thing worse.

"Now she's walking, she'd obviously love to run around with her friends. She does her best and hobbles along, she puts up with the pain and the fact that it means that her feet and legs will blister. Her hands are quite bad at the moment too which is a big restriction. Having said that, she still manages to have a dance to music and loves to sing and clap along.

"Isla is more aware of her EB now she is older and sometimes thinks before she does something because she's aware it will hurt. She still has games of rough and tumble with her sister though and she enjoyed playing in the snow this winter. Slipping on the ice wasn't so good however and the skin tore right off one of her fingers.

"We are having a bit of trouble getting Isla to eat enough. She has lost interest in food and really only enjoys soft food or liquids. We were in a restaurant the other day and all Isla wanted was a bowl of gravy! I guess food is just too much effort for her and she can't enjoy it."

Isla's reluctance to eat may be exacerbated by problems swallowing. Her throat closed up because the internal linings of her throat had repeatedly blistered and healed. She had an operation to stretch her throat and swallowing is a bit easier now but she will probably have to endure this procedure a number of times as she grows up. 

For the first six weeks of her life Isla was carried around on a padded mattress to avoid tearing her delicate skin. Picking Isla up and giving her a cuddle is no easier now and Rachael explains that they use Isla's nappy as a cushion when they lift her. "You can't pick up a child who has EB by gripping their body or by lifting them under their arms - it rips their skin. Goodness knows how we'll lift her as she gets bigger."

Isla's parents are active supporters of DebRA and the charity's nursing services continue to be a lifeline for the family. Rachael and Isla's dad Andy have raised thousands of pounds to help fund the charity's work.

Rachael says: "We want to help DebRA support other families and to ensure research continues into a cure for EB. We don't know what the future holds but there is always hope and we will continue to fundraise for DebRA and keep positive for Isla and others like her living with EB."