Every ‘Debra’ butterfly bought helps sufferers of rare skin disease

By Maurice Garvey

FAMILIES of young kids suffering from a rare and painful skin condition across South Dublin County, are appealing for residents to help by wearing a special butterfly tattoo this week.

The ‘butterfly skin’ condition EB (epidermolysis bullosa) is incredibly painful – causing skin layers and internal body linings to blister and wound at the slightest touch.

Casey Connors from Clondalkin who has a severe form

The week is held in conjunction with Debra Ireland, a charity whichis trying to raise funds to find a treatment for one of butterfly skin’s most harrowing side-effects – extreme itch.

“Katie died at eight weeks and the worst thing was we never got to hold her, she spent all of her short life in hospital,” said Miriam.

Miriam and her sons Josh and Matthew are asking communities to help by picking up a Debra Ireland EB butterfly temporary tattoo at any Applegreen store, and sharing a selfie of their new tattoo on social media.

One of only 300 people in Ireland are affected by EB, including Casey Connors (4) from Clondalkin and Claudia Scanlon (12), from Terenure.

Despite the enormous difficulties she faces, Casey attends pre-school at Scoil Mochua, Clondalkin.

“She loves dancing, singing and playing with blocks,” said Rachel.

“But now that she is getting bigger she is asking questions I can’t answer like why is her skin this way?”

As a mother Rachel knows there is currently no known cure for many people with EB. The only treatment is constant painful bandaging of the skin.

“Research is our only hope, we have to find something that will help ease the pain, children like Casey depend on it.”

Claudia Scanlon (12), from Whitehall Road, has 80 per cent of her body covered in open wounds.

“The pain is the worst thing, and even though I can do stuff, there are so many things I can’t do because of EB and it makes me angry,” said Claudia.

Claudia’s mum Liz said: “EB causes horrendous itching, it’s an itch that nothing can stop and as soon as a blistered wound starts to heal, the itching begins.

“For relief, people with EB scratch at the healing wound and their new skin can be gone in minutes. Even in her sleep Claudia can tear herself up with the itch and she wakes up to raw wounds and blood-soaked sheets.”

Claudia says EB research is vital as there is currently no known cure.

The Itch Project is being carried out at the Charles Institute of Dermatology at University College Dublin.

Dr Avril Kennan, Head of Research at Debra Ireland, said: “The itch makes sleeping extremely difficult, parents can spend all night comforting their children. At night children with severe EB can scratch themselves so badly they wake in the morning to blood-soaked sheets.”

Bluebell mother Miriam Quinlan is keen to raise awareness of EB in memory of her daughter Katie.

“With EB every little bit can hurt, but in this case every little butterfly helps, so please show your support, go to any Applegreen, pick up a Debra Butterfly and text Butterfly to 50300 to make a €4 donation.