The Butterfly Children’s Charity was created to improve the quality of life for children with Epidermolysis bullosa (EB), a rare genetic condition that causes the skin to be as fragile as a butterfly’s wing.
As soon as a baby leaves the protection of the womb, the lightest touch causes painful open wounds leading to a life of disability and severe pain. Children with EB require daily care: each treatment is unbearably painful and parents must quickly learn to become full time carers.
Life expectancy for children with EB is often short and families need support from the very first day of diagnosis, as the devastating reality of living with this condition becomes clear.
Our mission is to be there from day one: to help, offer guidance and deliver expert advice to parents, and to provide access to a dedicated team of specialist nurses, social workers and psychologists.
The Butterfly Children’s Charity is dedicated to transforming lives and helping to build a brighter future for children, adults and their families. Your contribution and support would further develop our team of specialist workers so that we can ensure every family has access to the correct care and treatment.
Each year we aspire to build upon our successes and continue to campaign and innovate in our methods to drive awareness for EB: no child or adult should have to suffer because of our lack of knowledge. Businesses can help by contributing in the form of sponsorship, by donating funds or by providing quality goods to sell in one of our charity shops.