Butterfly tattoo can help little Maria

A BLANCHARDSTOWN mum whose four-year-old daughter has a rare and very painful skin condition is asking local people to help by wearing a special butterfly tattoo this week.

Little Maria Maciukas from the Waterville area has the severe form of the 'butterfly skin' disease EB (epidermolysis bullosa) that leaves most of her body covered in open wounds.

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, Maria has to be bandaged almost from head to toe to protect her from everyday life.

"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," said Maria’s mum Gunita Spirge.

Maria’s body is 80 percent covered in bandages that have to be changed every two days, an extremely painful process that takes several hours.

“Bathing her is the worst part, she has open wounds and sores which have to be cleaned and there is so much pain,” Gunita said.

“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.

"Please pick up a Debra Ireland Butterfly Tattoo at any Applegreen service station and text the word BUTTERFLY to 50300 to make a €4 donation," said Gunita.

Gunita and her partner Greg Maciukas and Maria's brother Mark (12) are all focused on caring for the little girl, but it can be hard.

“During the summer Maria had many infections and then there is the terrible itching,” Gunita explained. “At night she can scratch herself until she bleeds and wakes up screaming with the pain. Itching is the biggest side effect of EB for Maria and there is no solution.

“Every day we have to check her bandages to see if there is a blister or a wound, she might have bumped against a toy or a piece of furniture and there could be a blister.”

A nurse and a care assistant are on hand to assist the family with every second day bath and bandaging process.

“It is good to have them because it is such a painful thing, no mother should have to do that to her child,” said Gunita.

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.

Gunita says local people can help the charity by calling into any Applegreen station for their Debra Ireland Butterfly tattoo.

“People don’t know about EB and when they find out they are shocked,” said Gunita.

“There is no cure. The demands of EB are 24/7 and beyond, even sleep is a struggle. The help and support that Debra provides is vital for children like Maria.”