Caregiver Stories

Lindsay Brim Orlando, Florida Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? Even though I had a complicated pregnancy with twins who were born at 33 weeks and spent 29 days in the NICU, we were completely shocked when our daughter had her first seizure at 6 months old. […]

Melissa O’Bryan Martinsville, VA Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? Our son had his first seizure at 6 months old. Then at 11 months, he had a cluster of seizures that resulted in us being medevaced to a larger hospital. A range of tests came back inconclusive

Brianne Trechter Spokane, WA Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? The Dravet diagnosis hit us like a ton of bricks. After multiple seizures and hospitalizations I had been doing my own research and come across Dravet Syndrome. I had a strong gut feeling that it was what

Erin Frost Apex, NC Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? When Mia was about 2.5 years old- the team ordered genetic testing since nothing was controlling her seizures. And they kept getting worse. Just before turning 3 years old, we found out that Mia had an abnormality

Kayci Capps Herculaneum, MO Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? William, an otherwise perfectly healthy baby, had his first seizure at 3 months old. After several hour-long seizures following this, we did genetic testing and discovered our sweet baby had a genetic condition known as Dravet Syndrome.

Jen Marasco-Kuhn Verona, PA Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? Our journey mirrors that of many other rare families, moving from the joy of a newborn to the shock of an unexpected medical event, and then to the frustration, fear, and uncertainty of navigating an unfamiliar and

Sarah Reyes Allen, Texas Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? Hayden Stella Reyes was a healthy 5 pounds 11-ounce little girl born on March 25, 2014. She was just four months old when she had her first seizure. We were getting her ready for her second day

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