Grayson's SCN2A Journey: A Story of Strength and Hope

In April 2023, Grayson was diagnosed with SCN2A, a rare neurodevelopmental disorder, after he began experiencing life-threatening seizures at just nine months old. Over the next 20 months, his journey was filled with countless hospitalizations, thousands of seizures, and many medications that, heartbreakingly, failed to help.

Today, we are incredibly grateful and relieved to say that Grayson’s seizures are finally under control!

Every day, Grayson faces challenges that many of us take for granted. Simple tasks are incredibly difficult for him, but he continues to fight with extraordinary courage. He spends nearly 30 hours each week in various therapies, all while attending daycare with the support of his wonderful nurse and caring teachers.

Grayson is learning to communicate using an AAC device, as he is currently non-speaking and lives with both receptive and expressive language disorders. Despite these challenges, he lights up every room he enters.

Grayson is the sweetest boy. He loves hugs, tickles, running, swings, music, and watching Ms. Rachel. And like any child, he has his favorites - pizza, donuts, and bananas!

SCN2A is an ongoing battle, but Grayson is a true warrior. His strength, determination, and resilience inspire us every single day. 

Grayson continues to break barriers, proving that even in the face of rare and difficult diagnoses, hope, love, and persistence can shine through.