• Infantile Spasms & Tonic Clonic Seizures
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Hi, I'm Isaiah.

I am very tactile and enjoy my chewy!

Hi. My name is Isaiah and I am 3 years old. SCN2A does not define me but it is a pivotal point in my life. My journey began months prior to receiving an SCN2A diagnosis. Around 4-6 months, my startle reflex became more prevalent. At 9 months old, I was told this startle was hundreds of seizures daily. This brought on aggressive treatments of many medications to try and control the seizures. Suddenly, I experienced infantile spasms that stole any milestone I had reached in the first year of my life. A year and a half, I spent more time in the hospital than not because on came the tonic clonic seizures. Creating further urgency to figure out next best steps to take that could improve my condition. My parents and neurologist worked endlessly to save my life. I currently experience less seizure activity and I have regained my bright smile and huge personality. I work hard every day to improve my development. I recently enjoy watching Peppa pig and Alvin & the chipmunks. Anything I can feel or chew, is my absolute favorite. Don't count me out on meal time, I can eat! Recently, I was diagnosed with autism but this won't stop me. I am determined to be my best self despite life challenges.

Our goal is to find a cure!

Did you or your child just receive a new diagnosis of SCN2A? If so, please know you are not alone!