Dravet Stories

Tell us about yourself and the Dravet patient in your life:  Dominic is an inspiring 18-year-old who has faced incredible challenges with unwavering determination. Diagnosed with Dravet Syndrome at age five, he has battled this rare and severe form of epilepsy—characterized by frequent, difficult-to-control seizures and significant developmental delays. Despite these obstacles, Dominic has shown […]

Tell us about yourself and the Dravet patient in your life. We live in Indianapolis Indiana! Alyssa loves to sing and dance. She loves Taylor Swift. She loves to cheer and participate in Unified Sports. When did the patient’s seizures begin? Alyssa began having seizures at 10 months old. She had a 32 minute seizure

Tell us about yourself and the Dravet patient in your life. Mason is my second of four sons. He is brave, curious, and loving. Him and his siblings share a deep bond, through all the challenges Dravet has brought us. He is mostly non-speaking but communicates with an AAC device. Our family loves to swim,

Tell us about yourself and the Dravet patient in your life. Benton LOVES police, Papa’s Boat, and living and loving life. He loves to go camping and ride on any motorized vehicle. He has the best big brother and even though life is tough we live each day for the small successes. When did the

Sawyer is a spirited, curious, loving and funny young man. He makes us laugh every single day! He loves vacations, spending time with his family and cousins, wrestling his big brother Harrison, and going out to eat. He also loves going to the movies, critters of all kinds, digging for worms and bugs outside, tide

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