Dravet Stories

Tell us about yourself and the Dravet patient in your lifeWe are from a small town in Pennsylvania. Londyn had a brother who is 7 and the biggest help when it comes to londyn and dravet. We love being outside but with londyn being tempsture sensitive that is hard to do for more then 30 […]

Tell us about yourself and the Dravet patient in your lifeRachel (mom), Tyler (dad), sister (Riley age 5), and Brady (our warrior, age 21 months.) we also have two dogs a cat. We live in WV. For fun, we love to go on walks and play outside. Brady loves anything water related and playing with

Tell us about yourself and the Dravet patient in your life Tara loves visiting animals, shooting hoops with a basketball, going to the beach, eating eggplant parmesan and giving hugs and kisses. When did the patient’s seizures begin? Tara’s first seizure occurred at 6 months old and continued through approximately age 18 (seizures are fairly

Tell us about yourself and the Dravet patient in your lifeWe live in Ambler, Pennsylvania. Jaxton loves to go to Hershey park, the beach, the zoo, the aquarium, play with his cousins and play with his bunny and puppy. When did the patient’s seizures begin?With Jax, it seemed that nothing was wrong until a sudden

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,