Tell us about yourself and the Dravet patient in your lifeWe live in Colorado and it gives us great joy to see Jeremiah run around and make sweet troubles. Happy to see him live his little yet hugely important life. He is so different as far as his diagnosed Dravet Syndrome and his awesome little […]
Tell us about yourself and the Dravet patient in your lifeWe are from Cincinnati, Jo Jo is currently 12. We love to attend events from A kid again, we live each day the best we can. When did the patient’s seizures begin?Jo started having seizures at 4 months old, seizures continued to increase and get
Tell us about yourself and the Dravet patient in your lifeTravis, our warrior, is 3 year-old. He is a fraternal twin. He also has a 4 year-old brother. We live in Paradise Valley, AZ. We love spending time as a family; going swimming, visiting grandparents, going on walks, having get-togethers at our home, etc. Our
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 &
