Dravet Stories

Tell us about yourself and the Dravet patient in your lifeWe live in the Midwest (NW Missouri). We love to be outside, watch/race motocross and spend time with family. When did the patient’s seizures begin?Jagger started having seizures at 5 months old. It was very unexpected and scary. As the seizures became more frequent and […]

Tell us about yourself and the Dravet patient in your lifeOur family isn’t much, it’s dysfunctional and not very close, but what matters is that my son knows he is loved unconditionally. He runs the show with anyone he’s around. His favorite thing to do is watch cocomelon, color pictures, and drink chocolate milk. Kylen’s

Tell us about yourself and the Dravet patient in your lifeHelloooo, I’m Sielana Johnson, i have 2 beautiful daughters, Brynlee & Blakelee, married, and have a golden retriever, neyland, and a cat, Nova Lee! Brynlee is 7 years old & Blakelee is 5 almost 6 months old. We enjoy spending so much time together &

Tell us about yourself and the Dravet patient in your lifeHello we are the Lay family and we live in Missouri. My husband and I have two boys Finley and our Dravet Warrior, Benton. Both boys are rough and tough. They love to play outside, swim, cook, and play on their tablets. Hanging out with

Tell us about yourself and the Dravet patient in your lifeWe are a family of 3. My husband, Dominic and myself. We have 2 dogs and 2 cats. We live in the Pittsburgh, Pa area. We love to go to amusement parks, swim, play outside, dance, sing, attend church and listen to music. What brings

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,