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Vital op as 'butterfly' girl drops to just 2st

A LITTLE girl who suffers from the excruciating 'butterfly' skin disease dropped to just two stone because she could only manage a few mouthfuls of food.

Brave Claudia Scanlon (8), from Dublin, has now had a stomach feeding tube fitted.

She has the rare and debilitating condition, Epidermolysis Bullosa (EB) which means that her skin blisters at the slightest touch, and she has to endure three hours of dressing changes every day to protect her skin.

Claudia was admitted to hospital in March after doctors became concerned that she was underweight after her throat began to narrow and she could only manage to eat a few mouthfuls of food at every meal.



Energy

Her mum Liz told the Herald that doctors warned her that Claudia would not survive if she did not have a feeding tube fitted.

"She's half a stone heavier now since it happened so it was a huge success," said Liz.

"Her energy is a lot higher. It hasn't improved the skin because they've told me that it (the nutrition) goes initially to growth first and then it'll go to healing. Her skin is very bad at the moment. She's at summer camp right now. She doesn't want me there because she just wants to be like the other kids."

Doctors at Our Lady's Hospital for Sick Children, Crumlin used a new procedure to insert the feeding tube in through Claudia's stomach.

"It was phenomenal for it to be a success," said Liz. "Usually doctors will insert the feeding tube through the throat but that would only tear Claudia's throat because it's so delicate so they went in through the stomach.

"It's taken the stress out of the mornings because when she wakes up she's not hungry."

Claudia made her First Holy Communion in May and arrived at the church in a horse and carriage as a special treat.

hnews@herald.ie