Two Dublin mothers whose young daughters suffer from a rare and painful skin condition are asking local people to help raise awareness by wearing a special butterfly tattoo this week.
Seven-year-old Casey Connors from Kilmahuddrick and four-year old Maria Maciukas from the Waterville area both have a severe form of the 'butterfly skin' disease EB (epidermolysis bullosa).
This extremely painful genetic condition causes skin layers and internal body linings to blister and wound at the slightest touch.
It is incredibly rare, with only 300 people in Ireland thought to have it, and the two have to be bandaged from almost head to toe to protect them 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.
Her mum 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."
Everyday life is difficult for Casey whose body is 80% covered in bandages.
Rachel added: "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 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."
Maria’s body is also 80% covered in bandages which have to be changed every two days, an extremely painful process that takes several hours.
Mum Gunita Spirge said: “Bathing her is the worst part, she has open wounds and sores which have to be cleaned and there is so much pain.
“Now that she can talk she is pleading with me, crying please Mummy don’t do it. It is heart breaking but it has to be done.”
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.
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.
Dubliners can help the cause by picking up a Debra Ireland Butterfly Tattoo at any Applegreen service station and text the word BUTTERFLY to 50300 to make a €4 donation.
