herald

Saturday 21 October 2017

Television role for brave Claudia (6) whose skin blisters at every touch

A BRAVE little girl who suffers from a chronic and debilitating illness will star in a new documentary about her illness, along with big names including Bill Clinton and Prince Charles.

Claudia Scanlon (6) from Crumlin, Dublin suffers horrific pain every day because of a genetic skin condition called epidermolysis bullosa or EB, which means her skin is so fragile that it blisters with the slightest touch.

Claudia's hands and toes are contracting as part of the illness, and part of her daily routine is to change bandages all over her body.

Her mum Liz told the Herald: "She does her dressings every day from head to toe for three hours, besides going to school, so her days are very, very full for a six- year-old. Each week brings a different challenge but she just gets on with it.

"She's in a very good frame of mind and she's very articulate about what she wants and doesn't want.

"She has a natural instinct. If she's walking down the corridor or in Stephen's Green shopping centre, for example, and it's crowded, she automatically steps to the wall."



BEAUTIFUL

Claudia will feature in the Irish version of an English documentary about EB, which will also feature Minister for Health Mary Harney.

Liz explained: "She has started to ask questions now, like when am I going to be better? Why don't I have skin like you and Dad?"

"She's used the word 'embarrassed,' and awareness has kicked in with her now. I stand her in front of the mirror every morning and I ask her, what are you, and she says I'm beautiful, and I say, yes you are."

Claudia has joined the Beavers and she attends St Louis primary school, where she has a full-time special needs assistant.

"She's reading and writing, and obviously her hands are contracting, but she holds the pen her way and she can write.

"There's nothing she doesn't participate in. The other children protect her in the corridor, and if she can't reach something, they'll get it for her, that's the way it's been instilled in them. And there's never a comment from them.

"It's every bit of her body that's affected but she never complains. She's a smashing kid with what she contends with."

Claudia loves fashion and X Factor and lives life to the full, but three times a day she has to take a string of medicines for anaemia, chronic constipation, and antacid to protect the lining of her throat.

hnews@herald.ie

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