When Ruaidhri was born, his mum Amanda saw the blisters. She knew immediately that her son had the same condition she and her four sisters did. And it broke her heart. Several months later, Ruaidhri was diagnosed with EB.
Now Amanda and her 4 sisters had a name for what they had lived with. For all their lives, they managed blistered feet and hands. All of them were sporty and loved football. So they’d put on two pairs of socks and tie up their boots. After Ruaidhri’s diagnosis, Amanda was put in touch with DEBRA Ireland. She says the support she found was amazing.
“We never knew that there were so many people with blisters, never mind a support network, too!”
Ruaidhri’s cousins also have EB. He’s sad for them. But he says at least they’ll understand each other and what they can and cannot do.
Despite EB, Ruaidhri is an active, happy boy. He climbs trees, rides his bike and loves hurling and football. He’s learned that he must stop after a certain time or he’ll blister. And Amanda says she’s thankful for the insight her own condition gives her into how her boy is feeling.
We’ll be there for Amanda, her sisters, and Ruaidhri. And with help like yours, we’ll keep working – supporting EB families, of course, but also with critical advocacy and research. Someday we hope for a world where EB can be cured. With your help, we will get there!