In 2019, DEBRA International was delighted to be able to support its member group, DEBRA BiH with a grant for their project to create and publish a picture book to help introduce people to and educate them on EB.
The goal of this project was to introduce children and young people to EB, educating them on the condition through the picture book, Butterfly Boy. Children with EB often encounter various problems caused by insufficient knowledge in their environment. There has been a need for the younger population and children to become more familiar with and educate themselves on EB in an adequate way. It was deemed necessary for children, and adults, to explain in a subtle, informative, and clear way what the life of “butterfly children” is like, and what the specificities and possibilities of the condition are in activities like socialising and going to school. We believed that creating a picture book using stories and illustrations would be appropriate for everyone, especially children, to help manage the stigma many with EB face.
Front cover of DEBRA BiH's picture book, Butterfly Boy
This was a brand-new project consisting of finding people to write the text, illustrate, and sponsor the costs of authorship, illustration, and printing. The project was managed by the President of DEBRA BiH, Senaida Gerin and DEBRA BiH member, Mirza Kahriman. Whilst the technical part of the project has been fulfilled, official promotion that had been planned immediately after printing has been postponed due to the COVID-19 pandemic. The project encountered complications, but through effort and commitment, we managed to complete the project and achieve the set goals. Experience has taught us that even in modern society there is a high level of stigma and misunderstanding towards people suffering from rare diseases. Through projects like these, we can contribute to reducing stigma and changing opinions in societies where people with rare diseases are present.
- Senaida Gerin, President DEBRA BiH