Sunday 20 May 2018

Little Casey (5) who suffers from excruciating skin disease reaches major milestone and starts school

Casey Connors (5) is in junior infants class. Photo: Suzanne Collins
Casey Connors (5) is in junior infants class. Photo: Suzanne Collins
Casey Connors (5) suffers from a severe form of the ‘butterfly skin’ disease EB (epidermolysis bullosa). Photo: Suzanne Collins
Casey Connors (5). Photo: Suzanne Collins
Casey Connors with her mother Rachel. Photo: Suzanne Collins
Geraldine Gittens

Geraldine Gittens

A five year-old-girl who suffers from a severe form of an excruciating skin disease has reached a major milestone in her life as she starts primary school.

Little Casey Connors is now in junior infants class at St Ronan’s National School, in Clondalkin, Dublin. However, she can't go out in the playground like her classmates.

She suffers from a severe form of the ‘butterfly skin’ disease EB (epidermolysis bullosa), an incredibly painful genetic condition which 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.

And she could be injured by someone just brushing against her, her mother Rachel says.

"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 mum Rachel.

"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," Rachel added.

Casey's body is 80 per cent covered in bandages which have to be changed every two days, an extremely painful process that takes several hours.

"Bandage days can be excruciating and on those days we have to give Casey extra pain medication to help her cope," said Rachel.

Debra Ireland provides day-to-day help and support for EB patients and their families and also funds research programmes to find better treatments and possible cures for EB.

"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" said Debra Ireland spokesperson Judith Gilsenan.

EB charity Debra Ireland is asking people to show their support by picking up a Debra Ireland Butterfly Tattoo at any Applegreen service station and texting BUTTERFLY to 50300 to make a €4 donation.

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