Grayson was born in January 2022, and the first year of his life was everything we could have hoped for. He was meeting all his milestones and the happiest baby you would ever meet; easy going and always had a big smile on his face.

Although he was continuing to meet milestones, at 9 months old, everything changed. We started to notice he would startle easily and by 11 months started having unusual movements that became increasingly more severe and concerning.

After spending January in and out of the Emergency Room and being dismissed by a local neurologist, we were strongly encouraged to go to Nicklaus Children’s Hospital who has a specialty neurology unit. It was there that our greatest fears were confirmed and Grayson was having multiple seizures a day, peaking at over 80 a day.

Finally, in March 2023, Grayson was diagnosed with SCN2A Developmental Epileptic Encephalopathy which is a rare genetic condition where the SCN2A gene has a spontaneous change that causes severe and difficult to treat epilepsy, global developmental delay, intellectual and physical disabilities, and profound autism. 

These mutations are so rare, that currently only about 360 people have been documented for clinical research; however, now that genetic testing is becoming more widely accepted and being performed more routinely, that number is expected to climb and become the number one cause for neurodevelopmental disorders.

Grayson has had thousands of seizures, countless hospitalizations, and so far we have yet to find a way to control his seizures fully as he is resistant to medication. Through it all, we remain hopeful as they have improved tremendously and he continues to amaze us with his progress, resilience, and fighting spirit and are blessed by an incredible therapy team who supports him and his needs.