Dravet Stories

Tell us about yourself and the Dravet patient in your lifeWill is our middle child with a de novo SCN1A mutation. He loves balls, cars, music, wearing one shoe and playing peek-a-boo. We live in southeast Missouri and enjoy going to the St. Louis Zoo, going on walks as a family with Will’s service dog, […]

Tell us about yourself and the Dravet patient in your lifeJuniper is our first child and such a joy. Her journey started in California before we moved back to beautiful New Mexico shortly after she was born. We find joy in the outdoors and spending time with family. Watching life through her eyes is the

Wanxuan comes from an ordinary family in China and was born in a city near the sea. There are three sisters in the family. She was the youngest, and her second sister was also autistic. We all love the sea. When did Wanxuan’s seizures begin? She had her first attack when she was almost six

I am the mother of 28 year-old Brian. We live in Knoxville, TN. I was a college French professor at Carson-Newman University, until I had to quit in 2000 because of Brian’s seizures and me being an hour away. My husband Tom was a research physicist at Oak Ridge National Lab. His research took a

Our family moved to Houston, Texas to get better medical care when we found out our sweet Andie was diagnosed with Dravet Syndrome. We have a great familial support system here and feel so blessed to be surrounded with so much family. Our family loves everything outdoors. We love discovering new places together through hiking,

My second son has Dravet syndrome. He is 27 years old. We live in Japan. A local nonprofit, Pokkapoka Runners, matches participant runners with disabled individuals. Participants deepen their interactions with disabled people through training sessions, practice sessions, etc. Thanks to this activity, my second son is able to run. When did Kiyonori’s seizures begin?

Hi my name is Ericka I am 26 years old and was blessed with my precious Royall on August 18. My son was diagnosed with Dravet syndrome in December, it has been a rough road expecially when you have no knowledge of it, but I am a women of strong faith and I highly believe

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