A SOUTH Dublin mother who lost her infant daughter to a rare and painful genetic skin condition is calling on Dubliners to lend their support by wearing a special butterfly tattoo this week.
Miriam Quinlan’s only daughter, Katie, was born with a severe form of the ‘butterfly skin’ condition EB (Epidermolysis Bullosa). This incredibly painful condition causes the skin layers and internal body linings to blister and wound at the slightest touch.
“Katie died at eight weeks and the worst thing was we never got to hold her,” said Miriam, from Bluebell. “She spent all of her short life in hospital.”
October 24-29 is National EB Awareness Week and Debra Ireland, the charity behind the worthy initiative, is trying to raise vital funds to help people with the condition through day to day family support and research to find a treatment for one of butterfly skin’s most harrowing side effects – extreme itch.
The Itch Project is being carried out at the Charles Institute of Dermatology at University College Dublin.
Now Miriam and her sons, Josh and Matthew, are asking fellow Southsiders 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,” said Miriam. “Go to any Applegreen, pick up a Debra butterfly and text BUTTERFLY to 50300 to make a €4 donation.”
Dr Avril Kennan, head of research at Debra Ireland, explained why more research is needed.
“EB brings a lot of pain and another major side effect is the awful itching that accompanies the healing process,” said Dr Kennan. “We all know how much you want to scratch a healing wound, so imagine having wounds all over your body that itch horrendously as soon as they start to heal.
“The itch makes sleeping extremely difficult and parents can spend all night comforting their children.
“At night, children with severe EB can scratch themselves so badly they wake in the morning to blood-soaked sheets.”
Miriam described Katie’s brothers as “football mad”, with older brother Josh in second year at Drimnagh Castle Secondary School and younger Matthew a fourth class pupil at the Oblates School in Inchicore.
In Katie’s memory, the family are keen to raise awareness of EB and help those who live with the butterfly skin condition.
“When Katie was born I didn’t know what EB even was, I had never even heard of it,” Miriam added.
“Now I know just how important it is that we find better treatments.”