Liz O'Donoghue, a primary school special needs assistant (SNA), said her first-ever parachute jump has been inspired by the bravery of an 11-year-old Casey, who lives with epidermolysis bullosa (EB).
EB is an incurable genetic condition that affects the body's largest organ; the skin.
People living with EB are missing the essential proteins that bind the skin's layers
together, so any minor friction, movement or trauma causes it to break, tear, and blister.
It is as fragile as a butterfly wing.
That's why we're here. To be a positive force for all those living with EB
and all whose lives have been impacted by EB.
We are here to compel everyone to care and inspire everyone to act. We are here to be a positive force for all those living with EB and all those whose lives have been impacted by EB. To help in all kinds of everyday ways, to listen, support, empower and alleviate unimaginable pressures.
We are the largest funder in Ireland of EB research. We drive research into effective treatments and cures for all types EB. Rare diseases, such as EB, often get overlooked when it comes to the development of new treatments. And because of the various forms of EB and its complexity, treatments and a cure are not universal. A cure is likely to look like a combination of treatments.