Adel Bounif France Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome? My daughter is called Manel. She was a baby when she had her first seizure at 8 months. The seizure lasted nearly one hour. At first, doctors didn’t say that it was epilepsy but one month later, she […]
Nicola Maskell United Kingdom What are some of the biggest challenges you’ve faced as a caregiver? The upset of seeing my child going through what he went through. How has Dravet syndrome impacted you and your family’s daily life and routine? It took over our daily life and routine. What advice would you give to
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
