• Infantile Spasms & Myoclonic Seizures
  • Non-verbal, Immobile

Hi, I'm Miles.

Miles's smile is contagious and radiates joy!

Hi, my name is Miles. I live in Michigan with my parents, Dan & Lindsay, & my sister, Juliet and brother, Elijah. I am the youngest and have brought so my love and joy into my family's life! My family adopted me from birth. I was the missing piece to complete our family. Fun fact, my brother, Eli, is adopted too. And we are full biological brothers! Since I was in the NICU, it was always suggested something was going on with me given a lot of physical markers, but no one could quite pinpoint what it was. Feedings and being delayed seemed to be the first things that caused a lot of problems for me. We quickly got to a neurologist and received a whole exome sequencing test. This test showed us I have the SCN2A mutation. Everyone was a little shocked, given that no one suspected seizure activity. Well, not much time passed when they started. Things haven't been easy since. I have a gtube & am strictly tube fed, I am severely developmentally delayed (nonverbal & immobile), I have GI issues, I have Infantile Spasms & Myoclonic seizures, and I have just started cyclic neurological storming. I am part of an amazing team (PATCH) where my nurse and PT meet with my weekly! They help me, along with my family, live my absolute BEST life. Although life has thrown me some curve balls, I know I am so loved! The support from the SCN2A families, my friends, & my family helped me get all the help I need.

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!