ZACHARIAH

Benjamin
  • Born: June 28
  • | De Novo

Hi everyone, I’m Zachariah but lots of people call me Zach.

I love to dance and currently my favorite song is 'Old MacDonald Had a Farm' so I can shout all the animal noises as loudly as possible!

I was diagnosed with SCN2A related epilepsy after starting having seizures at 3 days old. My particular SCN2A is denovo, and after a very rough start, I’ve had a good period so far without seizures interrupting my fun and learning. I am now loving nursery and take artwork home daily for my parents who’ve officially run out of space to stick up my masterpieces! I love to play shops, read stories and jump in puddles.

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!