A rainbow after the rain
« In the store, people think you are well educated,
Because you say hello as if you were addicted.
You need to touch every passer-by,
But they dont' even understand why.
When we look at you, it's impossible to see,
That you have an invisible disability.
Nobody can imagine at first sight,
That your life is such a hard fight.
They dont' know that you have stereotypical manners,
And that you always repeat the same gestures.
People's reaction can be disproportionate,
But this is just your way to communicate.
No Sir, my daughter is not acting.
No Madam, my child is not playing.
You should think twice before you criticize,
Because now it's too late to apologize. »
Adel Bounif is the father of Manel, a little girl who suffers from Dravet syndrome, a rare and severe form of epilepsy. She had her first seizure when she was 8 months old, an event that scared her parents who had never witnessed anyone having a seizure. A month later, Manel experienced more seizures, which quickly became a daily occurrence. Unfortunately, there is no cure. Manel has epilepsy but it doesn't define her. Adel and his wife have gone through many phases of sadness, depression and incomprehension but they have never lost hope. As an expert parent, Adel has written books about his daughter's story to help increase knowledge about epilepsy and Dravet Syndrome. He would like to illustrate the importance of ongoing research and address any myths or stigma surrounding epilepsy. He would also like the world to know that epilepsy is a condition, not a definition.
