Mother seeking support for daughter with ‘Butterfly skin’

by Padraig Conlon

A Clondalkin mother of a young girl with a rare and painful skin condition hopes local people will show support, by wearing a special butterfly tattoo this week.

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

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

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

Casey, who is in first class at St Ronan’s national school in Clondalkin, wants to be able to run and play like other children.

“Casey tries to do things that children without EB can do. She will get on a swing even if it hurts her and she’ll think about the pain afterwards,” mum Rachel Connors told Dublin Gazette.

Everyday life is difficult for Casey whose body is 80% covered in bandages which must be changed every two days, an extremely painful process which takes several hours.

“This year has been difficult; Casey’s skin broke down and she has wounds on parts of her body that used to be ok.”

Casey had to spend time in hospital this summer, as the baths she must take to prevent infection became too painful.

“She was screaming so badly every time we had to bath her it became impossible,” Rachel said.

“The hospital gave her steroids and new itch medication, but her skin is not as good as it was.”

October 21-27 is National EB Awareness Week and Debra Ireland, the charity that supports EB patients and their families, is asking people to help.

“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.

“Without funding there is no research and without research we will never find a cure for EB.

“Casey knows about EB Awareness Week, it makes her happy to see people wearing butterfly tattoos because it means they have some idea of what she goes through.”

A keen fan of American teen singer and dancer JoJo Siwa, Casey is looking forward to attending the singer’s concert in the 3Arena in November.

Debra Ireland helped the family secure VIP concert tickets with early access and a very special treat for Casey.

“JoJo has agreed to meet Casey before the concert.

“She is so excited, she’s told everyone in school.

“She absolutely loves JoJo and she’s getting ready to meet her idol.

“She’s got her JoJo bow for her hair and her tutu because she wants to dress like JoJo.”

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.

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