Mother seeking support for daughter with “Butterfly Skin”

by Padraig Conlon
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A Clondalkin mother whose young daughter has a rare and painful skin condition hopes local people will support her child by wearing a special butterfly tattoo this week.

Six-year-old Casey Connors from Kilmahuddrick has a severe form of the ‘butterfly skin’ disease EB (epidermolysis bullosa).

This incredibly painful genetic condition causes the skin layers and internal body linings to blister and wound at the slightest touch.

One of only 300 people in Ireland with EB, Casey has to be bandaged almost from head to toe to protect her from everyday life.

Casey is in senior infants at St Ronan’s national school in Clondalkin, but her skin condition, which causes her fingers and hands to fuse, leaves her struggling to even hold a pencil.
“EB affects every part of her body with constant blisters and sores. Casey is very brave but every day she has to take three different types of medication for pain relief,” said mum Rachel.

This week (October 22-28) is National EB Awareness Week and Debra Ireland, the charity that supports EB patients and their families, is asking people to help children like Casey.

“Please pick up a Debra Ireland Butterfly Tattoo at any Applegreen service station and text the word BUTTERFLY to 50300 to make a €4 donation,” said Rachel.

Casey’s body is 80% covered in bandages which have to be changed every two days, an extremely painful process that takes several hours.

“Casey has very limited use of her hands. She has had an operation to help with the fusing and her left hand is still in a splint so she has to try and manage with only one hand.”

Despite a life of daily pain, Casey enjoys school and playing with her friends.

“She has some very special little friends who see her and not her EB condition and it’s lovely to see the affection they have for each other,” said Rachel.

Debra Ireland provides day to day help and support for EB patients and their families. The charity also funds research programmes to find better treatments and possible cures for EB.

“The research Debra supports could transform the lives of children like Casey and it is now at a stage where every euro can make a vital difference to the future lives of people living with this condition.”

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