New adventure for brave little Casey (5) as she starts at primary school

LITTLE Casey Connors has reached a major milestone in her life as she starts primary school.

But what makes this achievement all the more remarkable is that five-year-old Casey suffers from a severe form of the ‘butterfly skin’ disease EB (epidermolysis bullosa).

The junior infants pupil at St Ronan’s National School, in Clondalkin, Dublin, is one of 300 people in Ireland with the disease.

The incredibly painful genetic condition causes the skin layers and internal body linings to blister and wound at the slightest touch.

Casey has to be bandaged almost from head to toe to protect her from everyday life.

“EB affects every part of her body with constant blisters and sores, 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,” said her mum Rachel.

Unlike her classmates, Casey can’t go out to play in the yard at break time.

“Casey could be injured by someone just brushing against her,” said Rachel.

“She has limited use of her hands so her SNA [special needs assistant] 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 has launched Debra Ireland’s Butterfly Effect campaign. The charity provides day-to-day help for EB patients and their families. People are asked to buy a Butterfly Tattoo at any Applegreen service station and text the word BUTTERFLY to 50300 to make a €4 donation.