Epilepsy

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.

[caption id="attachment_485" align="aligncenter" width="200"]PCDH19 Epilepsy Alyssa and I[/caption]