TWO brave Southside children are leading a national campaign asking people to help others with a rare and extremely painful skin condition by wearing a special butterfly tattoo this week.
Claudia Scanlon (15) from Whitehall Road, in Terenure and seven-year-old Casey Connors, from Clondalkin, have 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, Claudia, who has 80 per cent of her body covered in open wounds, has to be bandaged almost from head-to-toe to protect her from everyday life.
The Terenure girl is the public face of the campaign for National EB Awareness Week, October 21-27, and her posters are appearing around the country asking people to ‘See Me – Not EB.’
“Please see me for who I am and not for my disability,” Claudia said. “EB is painful but nothing hurts as much as people staring. Treat me like a normal person and no different than you would want to be treated.”
A transition year student at St Louis High School, Rathmines, Claudia has recently begun using an electric wheelchair, giving her new-found freedom.
“The power chair allows me go out with my friends, go to shopping centres, take the bus to and from school and go into town on the Luas,” she revealed.
“It has given me a lot more independence, as I’m nearly 16 and I want to be as independent as I can.”
Claudia'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.
She says the last year has not been great for her health-wise, but the plucky teenager is determined to get on with life.
“As I am getting older there is a risk of skin cancer with EB,” she explained. “This summer was difficult, as I had infections and problems with my feeding tube, but you just have to deal with these things.”
Enjoying a busy transition year, Claudia’s plans for the future include possibly going to college to study beauty.
“Realistically, I don’t have a lot I can do, but I’d love to be a make-up artist. I’m also very fond of animals and would like to work in an animal sanctuary.”
Debra Ireland provides day-to-day help and support for EB patients and their families.
Claudia says local people can help the charity by calling into any Applegreen station for their Debra Ireland Butterfly tattoo.
Her message for EB Awareness Week is valid all year round.
“I’d ask people to see the person not their disability, include us in your conversations and treat us with respect,” she added.
Casey, from Kilmahuddrick, also has to 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,” said mum Rachel Connors. “She will get on a swing even if it hurts her and she’ll think about the pain afterwards.”
Everyday life is difficult for Casey whose body is also 80 per cent covered in bandages that have to be changed every two days.
“This year has been difficult,” Rachel revealed. “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 to bear.
“She was screaming so badly every time we had to bath her it became impossible. The hospital gave her steroids and new itch medication but her skin is not as good as it was.”
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.
Mum, however, is a little bit worried. “I know how many people attend these concerts and I’d be concerned about Casey getting bumped into.”
Fortunately, 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,” Rachel revealed. “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 also funds research programmes to find better treatments and possible cures for EB.
“Without funding there is no research and without research we will never find a cure for EB,” Rachel explained.
“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.”
Debra Ireland Butterfly Tattoo at any Applegreen service station and text the word BUTTERFLY to 50300 to make a €4 donation," Claudia explained.