Brooklyn has Intractable Epilepsy. She began having seizures when she was 3 months old and we have tried 5 different medications and the Ketogenic diet and she still averages 15-20 seizures a day, that number quadruples when she is sick or going through significant changes.
Brooklyn’s overall syndrome is still undiagnosed so we don’t have a good idea of her prognosis for the future. Because she has so many seizures she is too tired to learn to do much else, she sleeps most of the day and hardly has the energy to keep herself awake sometimes. She tends to hold her breath during her really big seizures, to the point where she turns blue. While she has always started breathing on her own without any issue, the thought that this time she might not start breathing on her own crosses my mind every time.
My hope for cannabis is honestly to at least get the opportunity to try it. I would love it if it helped Brooklyn even to just decrease the number of her daily seizure. More than anything I would love for her to be seizure free but regardless of how well it helps her I want it to be an option for all parents to try for their children. It has been shown to help some kids and they should be able to have easier access to this treatment.
Brooklyn is as sweet as children come. She has the greatest little smirk and while hercues are subtle, she is an amazing little girl. Just being around her can brighten your day, calm your spirit and quiet your unease.