Dravet Stories

Our family lives in Georgia. I’m retired Army, and my husband is in the Reserves. My son is 8 years old. I enjoy crocheting and taking care of our mini farm. I have two other children who are 6 & 5. I also love hearing Matthew vocalize and laugh. When did Matthew’s seizures begin? Matthew’s […]

We live in New Mexico and we like to go camping and hiking as a family. When did Colton’s seizures begin? His seizures started at 5 months. He had multiple status seizures that lasted between 5 minutes and 2 hours, which is why he got genetic testing. What is your family’s hope for your future?

We live in Ottawa Ontario Canada. I am married with 2 daughters the younger one Zara has Dravet syndrome. Being all together brings us joy, we enjoy family dinners and playing at home. When did Zara’s seizures begin? 5 months old. The early days were very bad for my daughter she suffered with very bad

We are a family of four with two daughters. Berkley is the youngest (1 1/2) and Sawyer is 3. We enjoy spending time with each other, nature, and the simple things in life. When did Berkley’s seizures begin? At 4 months old I noticed what looked like tremors in her arms after nursing occasionally. For

We are from Maine. We love to go for rides together as a family and we sing a lot of nursery rhymes a long the way. Our daughter really enjoys when we play learning songs to join in together. When did Daliyah’s seizures begin? She had very long seizures and some were polymorphic, changed in

Hadley is part of a small family from South-Central Kentucky. In the summer months, you can find them out on the lake in their boat or in the woods on their side-by-side. Swimming and fishing are some of their favorite things to do! When did Hadley’s seizures begin? Hadley’s seizures began at 4 months old.

Hello! Logan is the oldest son of a busy family with three little boys, two dogs, a ferret and 5 chickens. They moved from California to Florida and have been living in Tampa for the last 5 years! We love to travel and go on adventures as a family. They do our best not to

Jane lives in Tulsa, Oklahoma and loves music and going to the lake. She loves books and dancing and hugging everyone! When did Jane’s seizures begin? 5 1/2 months was her first seizure. We were told it was probably a one time thing but then it happened again… and again… and again. We finally had

Jake lives near Boston with his mom and dad. He has an older brother who lives and works in Boston. Jake is 25 years old and is in a home based program. He loves to be outside and loves visits from family and friends. When did Jake’s seizures begin? Seizures began at 7 months. Diagnosis

Arianna lives in Texas with her parents and older sister. She loves music and likes to sing and dance. She also enjoy playing with her toys and swinging. When did Arianna’s seizures begin? Her seizures started the day after she turned 6 months old. The first two years she was hospitalized at least once a