Caregiver Stories

Siobhan Grevelding Baldwinsville, NY Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? We received Lennox’s diagnosis when he was one and a half years old. This was after having his first seizure at 10months old. Lennox was admitted to the PICU when the hospital called the CHOICES team to […]

Amy Lopez Tyngsborough, MA Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? Yes What are some of the biggest challenges you’ve faced as a caregiver? Finding respite, managing behaviors How has Dravet syndrome impacted you and your family’s daily life and routine? Behaviors cause the most stress in my

Tina McDermott Davenport, IA Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? Ryan was not diagnosed until he was 6yo. The Neurologist at our home hospital never brought up Dravet Syndrome and always said,”Your son is a mystery, see you in 6mo.” She never shared Ryan’s case with the