Fundraiser for brave Casey Connors who is living with ‘butterfly skin’
A fundraiser for Casey Connors, a young, local sufferer of EB disease, will take place tomorrow morning in Clondalkin.
Five-year-old Casey was born with the severe, genetic skin condition, epidermolysis bullosa, which causes the skin layers and internal body lining to blister and wound at the slightest touch.
A coffee morning for the Clondalkin girl is being held on Thursday morning at the Balgaddy Child & Family Centre from 10.30am to 12.30pm.
The coffee morning is to raise money for an iPad for Casey, as she cannot hold pencils and pens for too long. The event will have food and prizes.
EB is called ‘butterfly skin disease’ for the incredibly delicate state it leaves skin in.
Casey has a severe form of EB and has to be bandaged almost from head to toe to protect her from everyday life. 80 per cent of her body is in bandages and has to be changed every two days, an extremely painful process that takes several hours.
Along with Debra Ireland, the charity that provides hope and support for EB patients and their families, Casey helped launch The Butterfly Effect campaign last month that encouraged people to become social butterflies by wearing and sharing a special tattoo in honour of those suffering from an incredibly painful skin disease.