EuroParcs, Clarity Foundation
Imagine for a moment, without prior warning, your baby is born with a rare condition. Their skin is as fragile as the wings of a butterfly. The lightest touch causes pain and open wounds and this is set to continue for every day of their short lives
The hospital has little information to share because of the rarity of the disease and it is unlikely that they will have previously dealt with a case of a newborn with Epidermolysis bullosa
It is because of this that the DEBRA, the Butterfly Children´s Charity was created to support, inform and to accompany both families and health care professionals.Life is easier if we can share the journey.