We never dreamed that epilepsy would invade our world like this but God new it was coming. He was prepared for it even if we weren’t.
Our daughter, Alyssa, has PCDH19 Epilepsy. It is a genetic form of epilepsy that causes seizures, as well as cognitive and behavioral challenges. I write about our journey to raise awareness and to keep myself sane. This disorder was only recognized a few years ago but research is coming in at an astounding pace. It is now estimated that 1 in 10 girls who start having seizures before age 5 have this disorder.
I sometimes write about research or advocacy side of parenting a child with epilepsy but most often I focus on my experience. When we received the diagnosis, I broke. It has been a long journey back towards peace for me. I know that many other parents struggle too and I want them to know that you are not alone in this struggle. Coping with the loss of the dreams you had for your child is difficult. It’s a messy process and you will be a different person on the other side of it. There is hope though. Believe me, it doesn’t always stay this dark.