Mum asks locals to support daughter with ‘butterfly skin’

A BLANCHARDSTOWN mum whose daughter has a rare and very painful skin condition is asking local people to help support her child by wearing a special butterfly tattoo this week.

Little Maria Maciukas (3) from Waterville has the severe form of the 'butterfly skin' disease EB (epidermolysis bullosa) that leaves most of her body covered in open wounds.

This painful 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 is a lively little girl who loves to play but 80 percent of her body is covered in bandages that have to be changed every second day," said mum Guinita Spirge.

Bandage changing is an extremely painful process that takes several hours.

"Sometimes the medicine we give her doesn't even touch the pain, she cries and cries and we have to stop and calm her down but then have to continue," Guinita explained.

October 22-28 is National EB Awareness Week and Debra Ireland, the charity that supports patients and families, is asking people to help children like Maria.

"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 Guinita.

Originally from Latvia and Lithuania, Guinita and her partner Greg Maciukas and Maria's brother Mark (10), have made Blanchardstown's Waterville area their home

Maria recently started playschool in a special class at the Central Remedial Clinic.

"Her skin is very fragile, and we have to be careful of knocks and bumps, but she loves playschool and despite her condition she is not afraid of anything,” said Guinita.

"It is good for us too, we are happy as the staff in the CRC know how to look after her."

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.

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

"The research Debra supports could transform the lives of children like Maria and it is now at a stage where every euro can make a vital difference to the future lives of people living with this condition."