BabyBane vs. BrainStorm

By Emmanuel, Malignant migrating partial epilepsy of infancy, United States, February 6, 2019

Guided by God, Determined, & Courageous,

I was born during the August 21st, 2017 Great Solar Eclipse that traveled across the USA. My uncle nick named me BabyBane because of Bane in the movie The Dark Knight Rises. During the sewer fight Bane says BANE: “Ahhh you think darkness is your ally? You merely adopted the dark. I was born in it, molded by it. I didn't see the light until I was already a man, by then it was nothing to me but blinding!” Mom thought it was hilarious so we kept it. 

May 5 weeks old September 22, 2017 I started having seizures and mom didn’t know what was happening or why. We went to the ER and doctors didn’t understand what, why or how. After months in the hospital and several failed attempts with anti-epileptic drugs the genetic doctors said I had Malignant Migrating Partial Epilepsy in Infancy an it was a KCNT1 Gene Mutation. 

By 6 months old mom discontinued all AEDs and was treating me with cannabis. Although it’s illegal in our state, I’m having less seizures than I initially started with. Seizures are still daily and are hard but we stay strong through advocacy, education and not only relying on doctors words. 

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