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.
How do we help?
Thanks to our team of psychologists, nurses and social workers we help resolve problems and answer any questions on a daily basis. We are here to offer our support at the most difficult times.
We are raising awareness with the hope that one-day in the near future people will not move away from someone with EB for fear of catching the disease.
We share experiences and knowledge and our aim is to encourage mutual support between families.
We participate in and co-finance important research projects.
We help to improve knowledge and understanding for professionals working in health care, social care and the education system.
We strive to remove the obstacles facing families on a daily basis, like access to specialist bandaging materials to treat wounds.
All of our work is made possible thanks to the efforts and enthusiasm of the many people and organizations that support us. THANK YOU for giving us wings.