On August 21, 2023, Dani had her first seizure. She was just shy of nine months old. What followed was a journey we never expected—one filled with uncertainty, fear, resilience, and ultimately a diagnosis of Dravet Syndrome.

Over the past three years, our family has experienced countless hospital stays, emergency room visits, doctor’s appointments, medication changes, sleepless nights, and difficult decisions. We’ve faced some incredibly scary moments and close calls along the way. Through it all, Dani has continued to amaze us with her strength, determination, and beautiful smile. Every day that I hear her laugh and see her light up a room, I am reminded how grateful I am that she is here with us.

Dravet Syndrome is a rare and severe form of epilepsy that begins in infancy, affecting approximately 1 in every 15,000 to 20,000 births. Children with Dravet experience frequent and prolonged seizures that are often resistant to medication. Beyond seizures, many individuals face developmental delays, mobility challenges, speech difficulties, and other lifelong medical complications.

Perhaps most frightening is that Dravet Syndrome carries a significantly increased risk of sudden unexpected death in epilepsy (SUDEP), making ongoing research, education, and support critical for families like ours.

June is Dravet Syndrome Awareness Month, and we’re raising funds to support research, advocacy, family resources, and the continued search for better treatments and ultimately a cure. Every donation—no matter the size—helps bring hope to families navigating this diagnosis and moves us one step closer to a future where children with Dravet can live safer, healthier lives.

Thank you for supporting Dani, our family, and the entire Dravet community. Your generosity truly makes a difference