The story of Adel
My name is Adel Bounif. I live in the North East of France . My daughter is 12 years old and is suffering from the Dravet syndrome. It is a rare genetic epileptic encephalopathy. The disease begins in infancy but is lifelong because there is no cure. This mutation is most often not inherited from the parents, but is considered as de novo or “new” mutation in the child.
In order to make people aware about this rare disease, I have decided to write books to share my daughter’s story. The goal of my books is to raise awareness about epilepsy and Dravet Syndrome but also to make pharmaceutical labs aware in order to develop research (gene therapy).
I have also published a comic for children which gives me the opportunity to go to schools in order to educate children about epilepsy and the stigma linked to this condition. I hope that my books will increase knowledge about epilepsy in the general public and will refuce the feeling of isolation faced by patients and families. My comic book has received an Award in a famous French Literary Prize.
Things never happen by chance. Being the caregiver of my daughter changed my life forever! It taught me how to be resilient and how to be a better man by helping and educating people. This is destiny. I was giving this life because I was strong enough to be an Epilepsy Voice.
Adel