Local Families Appeal For Butterfly Skin Children

ballyboughal-familyPictured are Maria and Val Fynes and their children Rebecca, Keziah and Isaiah from Ballyboughal, who lost son Aaron (16) to a severe form of the 'butterfly skin' disease EB (epidermolysis bullosa), are asking local people to show their support for EB patients by picking up a Debra Ireland butterfly tattoo at any Applegreen and texting BUTTERFLY to 50300 to make a E4 donation

A Swords family and a Ballyboughal family, whose lives have been turned upside down by a rare and painful genetic skin condition suffered by their children, are asking people throughout North County Dublin to help to ease their suffering, by wearing a special butterfly tattoo this week.Erica Hyland (7) and her sister Alison (12) from Ridgewood in Swords both have a severe form of the ‘butterfly skin’ disease EB (epidermolysis bullosa). This incredibly 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, Erica has to wear protective pads on her arms, legs and feet to preserve her from everyday knocks and possible falls. “If Erica has even a slight fall she is guaranteed to cut and bleed and if that happens she can’t do anything for days,” said dad Mark. “The girls do their best to get on with life but it can be difficult, they have lost their nails due to EB and they get constant wounds and blisters. They get fed up fielding questions about things like that,” he explained. Another local family who are appealing for support are Val and Maria Fynes from Ballyboughal, who tragically lost their 16-year-old son Aaron who suffered from a severe form of the disease. Aaron had to be bandaged from head to toe to protect him from everyday life. “Aaron was in severe pain before he died, 75 per cent of his skin was missing, he was going blind and he had to use a wheelchair,” said heartbroken dad, Val. This week, October 24th-29th is National EB awareness week and Debra Ireland, the charity that supports EB patients, is trying to raise vital funds to help people with EB through day to day family support and research to find a treatment for one of EB’s most harrowing side effects – extreme itch. Dr. Avril Kennan, Head of Research at Debra Ireland, explains,”At night children with severe EB can scratch themselves so badly they wake in the morning to blood soaked sheets.” Now the Hyland and Fynes families are asking the local community to help those living with this distressing condition by picking up a Debra Ireland EB butterfly temporary tattoo at any Applegreen store and sharing a selfie of their new tattoo on social media. “With EB every little bit can hurt, but in this case every little butterfly helps, so please show your support, go to any Applegreen, pick up a Debra Butterfly and text BUTTERFLY to 50300 to make a €4 donation,” both families appeal. Erica Hyland is in second class at Holy Family School in River Valley and Alison has recently started secondary school at the Loreto College in Swords. “Both girls love swimming, dance and drama and doing arts and crafts,” said dad Mark.