A girl whose skin blisters at the slightest touch will return to school despite her condition. Claudia Scanlon (5) was born with a rare genetic disorder, Epidermolysis Bullosa (EB), which means that her skin is as fragile as the wings of a butterfly.

She has to have her bandages changed constantly and has to choose activities carefully.

But the determined little lady is eager to start back at St Louis, in Rathmines, when it reopens after the summer holidays, according to mum Liz.

Bandages

Liz said: "She is very bright, very intelligent in her speech and thinking. She absolutely loves school. She's doing her ABCs and counting now. The school has been so accommodating."

Liz and her husband Gary, who live in Crumlin, are learning to cope with the skin disability.

She said: "I'm hoping that High Babies will be just as easy for Claudia. She's great -- she just kind of adapts."

Liz said Claudia was now much more independent and was learning how to do her own dressings. She said: "Claudia has a doll which she practices on. She says 'I'm the boss of the bandages'.

"She understands more, but some days she just doesn't want to get it done. If she's tired, she asks if she can skip it, but it's just about changing her mindset."

The family is in regular contact with doctors, dieticians and physiotherapists about Claudia's care.

Liz said: "Her hands are fusing. Everything down to her gums and teeth are affected.

"She is tearing her throat when she swallows and her eyes are sore. But her face and neck area are the only parts which are not affected."

Liz said Claudia did not start walking until she was three-and-a-half but has since made up for lost time.

The family spent the summer in Wexford, where Claudia went horse-riding and swimming.

Liz said: "When she got up on the horse, I was so nervous. I didn't want to say to the people at the stables that she had EB, but they figured out. They put extra padding on her saddle and in her helmet and she loved it."

Thanks to funding from Debra Ireland, the organisation for children with EB, scientists are currently investigating stem cell research in search of a cure.

But Liz said: "The last couple of years have been tragic. Every year since Claudia has been born there has been a death.

Heels

"There are so few births and so little known about it. Their life expectancy is much less and their whole life is so traumatic."

But Liz is determined to remain stay positive. She said: "Everything is an achievement. I want to push her as far as she can go."

Debra Ireland is holding a High Heel Challenge in Deer Park, Stillorgan, on September 13.

The charity has asked men and women to don heels for the organisation, and entry costs €20.

For further information, contact Jennifer on 01 412 6924 or email Jennifer@debraireland.org.

clairemurphy@herald.ie

- Claire Murphy