Casey Connors is a 5-year-old girl from Clondalkin.
She has just started school but she can’t go out to play in the yard at lunchtime like the other children.
Casey has a painful skin disease called EB (epidermolysis bullosa), or as it is sometimes known, butterfly skin.
The genetic condition causes the skin’s layers and internal body linings to wound and blister without warning.
EB means that people like Casey have to wear bandages almost covering their full bodies every day.
It also means that the slightest brush or touch against the skin could lead to serious injury.
Casey’s mum, Rachel, says that EB has severely impacted her daughter’s life.
“Casey can’t chew food because blisters on her throat make it difficult to swallow and she has to be on three different types of medication every day for pain relief.
“She has limited use of her hands so her SNA helps her to open her books and organise her things.
“The school has never had a child with her condition but they have been very helpful in organising things so Casey can attend.”
Casey’s bandages have to be changed every two days – a process which takes many hours, is extremely stressful, painful, and tiresome.
“Bandage days can be excruciating and on those days we have to give Casey extra pain medication to help her cope,” says Rachel.
The severity of the condition means that those living with EB are susceptible to an aggressive form of skin cancer in their teenage years.
Just 300 people in Ireland are diagnosed with EB.
This week marks the beginning of an awareness campaign for the disease.
Casey, Rachel, and EB charity Debra Ireland are asking people to help by becoming a “social butterfly” and picking up a Debra Ireland Butterfly Tattoo at any Applegreen service station.
They are also asking that people take this EB awareness campaign to social media by taking a selfie with their tattoo and share it using the hashtag #butterflyeffect.
Debra Ireland spokesperson Judith Gilsenan says that the campaign will help to ease the pain of this condition for so many families.
The charity works with those living with EB while also aiming to find a cure for the disease.
“With EB every little bit can hurt but a little Debra butterfly can help so much so please pick one up at any Applegreen, Service Station.”
Over 40,000 people around the country are expected to support the cause this week.
