Southside mums promote campaign for EB awareness

TWO SOUTHSIDE mothers whose young daughters have a rare and painful skin condition are asking local people to support their children by wearing a special butterfly tattoo this week.

Five-year-old Casey Connors, from Clondalkin, who has just started school, 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.

"EB affects every part of her body with constant blisters and sores,” explained mum Rachel. “Casey can't chew food because blisters on her throat make it difficult to swallow and she has to be on three different types of medication every day for pain relief.”

Casey, who is in junior infants at St Ronan's National School in Clondalkin, can't go out to play in the yard like other children.

"Casey could be injured by someone just brushing against her," said Rachel. "She has limited use of her hands so her SNA helps her to open her books and organise her things.

"The school has never had a child with her condition but they have been very helpful in organising things so Casey can attend."

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

"Bandage days can be excruciating and on those days we have to give Casey a fourth type of pain medication to help her cope," added Rachel.

Claudia Scanlon (13), from Whitehall Road, Terenure, also has a severe form of EB which dictates every aspect of her life.

Her mother Liz said: “At this stage she is used to constant pain and constant bandaging but it is the lack of social acceptance of people with EB that can be the most hurtful.”

The Scanlon family try to ensure that despite her condition, Claudia, who is a second-year pupil at St Louis High School, Rathmines, has as normal a life as possible.

"Her EB is causing her fingers to fuse together so she is losing the power in her hands but the school is scribing for her,” Liz stated. "Claudia has also recently started ballet which is almost unheard of for an EB child. I don't know how she puts her poor feet through it, but she loves it and she gets lost in the dance."

A devoted GAA supporter, Claudia goes to all the Dublin games and every Saturday she helps out with the younger players at Kevin’s Hurling and Camogie club in Crumlin.

"She really enjoys being at Kevin’s and everyone there is so kind and accepting," said Liz.

This week, October 23-29, is National EB Awareness Week. Debra Ireland, the charity that provides hope and support for EB patients and their families, is trying to fight this devastating disease by creating a ‘butterfly effect' to raise both funds and awareness.

They are asking people to help by picking up a Debra Ireland Butterfly Tattoo at any Applegreen service station and texting the word BUTTERFLY to 50300 to make a €4 donation. They are also asking people to spread the word by taking a selfie of their tattoo and sharing it on social media to create awareness and be part of the #butterflyeffect.