Hi, I'm Rylee.

Rylee loves cuddling, bubbles, miss Rachel, and toys that make noise and light up.

Rylee is a twin of her brother Aiden, by the time she was 6 months old I knew there was something going on. From there I have spent roughly 2 years, fighting for her symptoms to make any kind of sense. After many "we wont know till shes older" answers, I finally got her into genetic testing, along with her sedated MRI. Rylee just recently had another Sedated MRI a few months ago as well. Finally in September we got her genetics results back confirming she has SCN2A, loss of function. Rylee is my amazing, sweet, gorgeous, strong wild child.

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!