A Blanchardstown mother is calling on people to support the work of Debra Ireland during National EB Awareness Week, by wearing a special butterfly tattoo.
Four-year-old Maria Maciukas from the Waterville locale suffers from the ‘butterfly skin’ disease, which makes the skin blister and wound at the slightest touch.
Gunita Spirge, Maciukas’ mother says that seeing her daughter live with the disease is difficult.
“Maria loves to chat and play with her dolls, she enjoys going to her special playschool in the Central Remedial Clinic, but with EB things can be hard, she has good days and bad days,” she says.
About 80% of Maciukas’ body is covered in bandages to help protect her from everyday life. These bandages have to be changed every two days and can be an extremely long, painful process for Maciukas.
“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,” says Spirge.
About 300 people live with EB (epidermolysis bullosa) in Ireland, which is currently incurable.
Gunita says that trying to treat EB is a 24/7 job.
She said: “During the summer, Maria had many infections and then there is the terrible itching.
“At night she can scratch herself until she bleeds and wake up screaming with the pain. Itching is the biggest side effect of EB for Maria and there is no solution.
This week, until Sunday, October 27 is National EB Awareness Week and Gunita is asking people to raise awareness and funds for Debra Ireland, the charity which supports EB sufferers and their families.
To show your support for Debra Ireland you can pick up a Debra Ireland Butterfly Tattoo at any Applegreen service station or text the word BUTTERFLY to 50300 to make a €4 donation.