Little Casey is happy despite the pain from a rare skin condition
TOMORROW is Casey Connors’ fourth birthday.
If her Clondalkin-based mum, Rachel, could give her any birthday present in the world, she’d banish EB from her daughter’s life.
Epidermolysis bullosa, a rare, distressing and painful condition saw Casey born without skin on her hands and feet.
The disorder causes skin layers and internal body linings to blister at the slightest touch.
Casey has the severe form (recessive dystrophic).
Her skin is missing the collagen that binds it together.
Her skin is so fragile, it blisters at the slightest touch.
Simply tripping over a toy can cause huge blisters that have to be lanced to prevent them getting bigger.
“Every day I have to watch Casey scream in pain from wounds she has created simply by learning to walk. It’s very tough,” says her mum, whose five-year-old son, Jayden, doesn’t have EB.
“I have to remind him that Casey can’t play the way he’d like. She isn’t able to go out on a scooter or bike in summer.”
A sunny day delights most children, but sun causes blisters in Casey’s eyes.
“When she gets them she can’t open her eyes for a couple of days. You have to keep talking to her to let her know you’re there beside her.
“The look of fear when she sees me preparing for her bandage change breaks my heart.
"She’s too young to understand that the pain I have to inflict on her is keeping her alive, making sure a new wound doesn’t turn into an infection.
"I should be able to fix this, kiss it better. But I can’t fix it. I never will.”
Rachel looks after Casey at home, mainly helped by her mum Eileen, dad Edward, and sisters.
She visits a clinic for nursing care. When she realised the severity of her daughter’s condition, she gave up part-time work as a cleaner.
Because of the constant wounds, patients like Casey are susceptible to an aggressive form of skin cancer from as early as their teens — yet like all EB heroes, Casey’s a resilient little girl.
“She’s a happy child despite all she goes through. She loves Peppa Pig, Frozen and My Little Pony,” says Rachel, who lives in rented accommodation but is trying to secure a permanent home for her family.
“Because it’s rented, I can’t change anything in the house. If Casey needed a special bath, I couldn’t put it in for her.”
DEBRA Ireland are advocating on Rachel’s behalf to improve her housing.
They feel — with such a profoundly sick child — she’s a medical priority.
* Children with EB are known as ‘butterfly children’ — skin is fragile like butterfly’s wings.
* Skin blisters are the major symptom — even minor rubbing may cause blistering.
* There’s no effective treatment/cure for EB. The only form of treatment is constant painful bandaging of skin to prevent infection.
* DEBRA Ireland’s Wicklow Mountains Challenge takes place on March 13. The biggest fundraiser for EB, 800 participants will run either 21km or 10km.
* More info: visit https://debraireland.org
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