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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.
There is a misconception in the outside world (ie: everyone not living with a person who has epilepsy) that as long as a person is not actively having seizures, all is well. That may be the case for some families üydealing with less severe forms of the disorder but epilepsy is a constant presence for many people, even when…
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