Dravet Stories

Tell us about yourself and the Dravet patient in your life For 18 years we have fought Dravet syndrome. Tristin had his first official seizure at 4 months old.  Looking back though, I believe he was having seizures much earlier. Dravet syndrome has not stopped us from living. We camp, do coastal visits and go […]

Tell us about yourself and the Dravet patient in your life I am one of the founding members of the Dravet Syndrome Foundation (DSF) and have had the privilege of serving as the Executive Director since 2012. This cause is deeply personal to me, as my youngest son, Elliot, is living with Dravet syndrome. Although

Tell us about yourself and the Dravet patient in your life My name is Mariam, mother to a Dravet syndrome patient. Close to Lake Victoria, in Kenya, a strong and brave little boy known as Teko-was born a healthy boy, very handsome and sweet. Teko loved to sing and could imitate his father singing and

Tell us about yourself and the Dravet patient in your life Our family of four lives in the small but mighty town of Pitman, located in south Jersey. However, our Dravet journey began in Boston. After meeting in college in North Carolina, my husband Adam and I moved to Adam’s hometown in Massachusetts where we

Tell us about yourself and the Dravet patient in your life? We live in Wisconsin and are a family of four that consists of mom, dad, Bauer and his younger brother Bryden. We enjoy bike riding, boating, fishing and swimming.  When did the patient’s seizures begin? Bauer’s seizures began at 3 months old. They started

Tell us about yourself and the Dravet Patient in your life My family and I live in Crossville, Tennessee. We love spending every day with our little warrior and watching his favorite movie, Toy Story. When did the patients seizures begin? Bentley’s first seizure was when he was 4 months old. It was a short

Tell us about yourself and the Dravet patient in your life Hi There!We are from Eastern Kentucky. Hudson “Blake” enjoys trips to the zoo and visiting local farms. He also loves music and dancing. When did the patient’s seizures begin? Hudson Blake and Grady Lee (identical twins) were born in September 2014 and were the

Tell us about yourself and the Dravet patient in your life Santiago Alessandro Anaya is a 3 yr old warrior and he will soon be having a baby brother, Ezequiel. His mommy is Valeria and his daddy is Jose Angel. We live in Del Rio, Tx. Santiago spends a lot of time with his grandparents

Tell us about yourself and the Dravet patient in your lifeThis is Cora. She is a 2 year old sweet and sassy little lady. She is a pandemic baby! She has an older sister named Maggie. Her mommy is Jen and daddy is Chris. She has a pet dog named Lager and a fish named

Tell us about yourself and the Dravet patient in your life Hello, This Is Jacob Dean. Jacob lives with his mother & step dad. We are from NE Ohio. He is going to be 11 years old August 2022. Jacob really enjoys skateboarding, he doesnt know how to push, but he can ride & hold