What would you do if your child was born with skin that blistered at the slightest touch?
Three year old Casey Conors has a severe, debilitating condition called EB (epidermolysis bullosa), best described as the “worst disease you’ve never heard of.”
Casey was born with EB which means that she has no collagen, so her skin is extremely delicate and blisters at the slightest touch.
Recently, she tripped over a small Peppa Pig toy and fell and tore the skin from her knees and feet. She could not walk for a week because of the fall.
Currently there is no cure for EB and the only treatment is constant painful bandaging of skin to prevent infection.
Casey’s mother, Rachel, and her auntie, Louise, recently got the EB logo tattooed on their arms as symbols of support for EB sufferers, and to raise awareness of the rare condition.
Rachel said: “I decided to get an EB tattoo because of my daughter Casey. She has EB & it’s the symbol of her condition. Her extraordinary strength and courage will move you to tears. But like all EB heroes she is also a real fighter.
She continued: “The tattoo is to show my love & support for Casey & all others battling with EB. It is also to raise awareness – if people see the tattoo they are likely to ask about it so it’s a chance to tell people about the condition.”
For more information about EB visit DEBRA Ireland, the only charity dedicated to providing support and services to children and adults living with EB. EB Awareness Day takes place on Friday 23rd October. Text BUTTERFLY to 50300 to donate €4.
