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Epilepsy with Ace

Epilepsy With Ace

My Name is Ace, I was born with Septo-Optic Dysplasia which is a vision condition and a brain condition. For me, this means low vision, cognitive delays, Cerebral Palsy, and now a severe form of Epilepsy called Lennox-Gastaut syndrome. Out of everything, Epilepsy has been the hardest of them all. I can practice catching a ball, walking upstairs, and even reading. I can gain the strength and knowledge to overcome obstacles. I can't however practice not having a seizure. When my brain "reboots'' as I call it, I lose all control and sometimes my memory, leaving me exhausted and confused. I don't get to pick and choose when this happens. It really has become my biggest villain at the moment, taking every bit of independence I have worked so hard for. However, I continue to fight and make progress with the help of medication, therapy, numerous surgeries, and injections. We continue to research new methods and treatments to help me find independence from these seizures. I'm a typical middle school kid who loves playing adaptive sports like baseball, soccer, and basketball. I also love being outdoors, hunting, fishing, riding my adaptive bike, and going on adventures with my family. My mom is constantly finding new ways to adapt to my abilities and to keep me safe and included. I love going to adaptive summer camps where I can do many of my favorite things safely like zip-lining, shooting arrows, and riding horses. My content includes a lot of my adaptive adventures. As well as supplemental education, resources we have found to help me on my journey, and why it is essential to continue the research to cure epilepsy.

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