Families appeal to the public to wear special butterfly tattoo
By Aideen O'Flaherty
THE families of two young girls who have epidermolysis bullosa (EB), also known as the ‘butterfly skin’ disease, a painful genetic condition that causes skin to wound and blister at the slightest touch, are appealing to people to wear a special butterfly tattoo this week, National EB Awareness Week.
Casey Connors (7), from Kilmahuddrick in Clondalkin, and Claudia Scanlon (15) from Whitehall Road in Terenure, are just two of 300 people in Ireland who have been diagnosed with EB.
Casey with mother Rachel Connors
Treatment of the incurable condition includes having to have bandages, which cover 80 per cent of the young girls’ bodies, changed every two days, in an extremely painful and hours-long process.
Claudia, who is a transition year student, is urging people to see beyond her condition – and to see her for the person that she is.
“Please see me for who I am and not for my disability,” she 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.”
The teenager recently started using an electric wheelchair, which has given her a new lease of life and a sense of freedom that her condition had previously taken away from her.
“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.
“It has given me a lot more independence, I’m nearly 16 and I want to be as independent as I can.”
Despite her chronic condition, Claudia takes her medical issues in her stride and is determined to live her life as best she can, and hopes to either work in beauty or animal welfare when she finishes school.
“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,” she explained.
Casey, who is in first class at St Ronan’s National School in Clondalkin, is still learning to live with the debilitating condition, and longs to be able to run and play like other children.
Claudia Scanlon
Casey’s mother, Rachel Connors, said: “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.
“This year has been difficult. Casey’s skin broke down and she has wounds on parts of her body that used to be okay.”
Last summer, the young girl had to be admitted to hospital as she struggled to cope with the baths she must take to prevent infection, which became too painful for her to bear.
“She was screaming so badly every time we had to bath her, it became impossible,” said Rachel. “The hospital gave her steroids and new itch medication but her skin is not as good as it was.”
However, Casey is looking forward to seeing her idol, American singer and dancer JoJo Siwa, in the 3Arena next month, and Debra Ireland helped the family secure VIP concert tickets with early access and a very special treat for Casey.
WATCH:
“JoJo has agreed to meet Casey before the concert,” said Rachel. “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.”
The families of both of the girls are appealing to people to pick up a Debra Ireland butterfly tattoo at any Applegreen petrol station, and text the word BUTTERFLY to 50300 to make a €4 donation.
This will support the work of Debra Ireland, a charity that provides patient support services and drives research into treatments and cures for EB.
