Michele lives in Orange County California with her husband Gareth and her sons Gavin and Aidan. After years searching and traveling across the country for a proper diagnosis, Gavin, now age 25, was diagnosed with Dravet Syndrome at age 8 by Dr Dravet with the help of Mary Anne Menskies , formally of the Idea […]
Brianne Trechter is the mother of Berkley, a six-year-old with Dravet syndrome, and a passionate advocate for families navigating life with severe, complex epilepsy. Through her family’s journey, she has become deeply familiar with the realities of managing unpredictable seizures, coordinating medical care, and balancing the needs of siblings and a busy household—all while holding
Laura is a New Jersey native and mom to two daughters, Leah (9), who lives with Dravet syndrome, and Bailey (4). Together with her husband, Matt, she navigates the daily challenges of raising a medically complex child. Leah was diagnosed with Dravet syndrome at age three, but if you meet her, the first thing you’ll
Dominique lives in the Bay Area of California with her husband Tony, their toddler son Rowan, and their dog Remi. Rowan was diagnosed with Dravet syndrome at six months old and has a de novo SCN1A gene mutation. This revelation turned their world upside down, ushering in an unprecedented wave of fear as the family
Amanda Parchim is a Dravet Syndrome Foundation Family Network Ambassador (Midwest Region) who lives in St. Anne, Illinois, with her husband, Rob, and their two children, McKinley (18) and Mason (15). Amanda graduated from Eastern Illinois University with a bachelor’s degree in Consumer Affairs and a minor in Business Administration. She currently works as an
Christina Osenbach is a parent advocate and digital creator based in North Carolina, where she lives with her husband, Bryan, and their four children. After a ten-year career as a Board Certified Elementary Education teacher, Christina made the intentional decision to step away from the classroom to become a full-time caregiver and advocate for her
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Brandee lives in a small rural North Carolina town with her husband, Steven, and two daughters, Kenidee and Addison. Kenidee, her oldest daughter, was diagnosed with Dravet Syndrome at 6 months old; one month after her first seizure. When Brandee received Kenidee’s diagnosis she was overwhelmed, terrified and lost. Since receiving the diagnosis, Brandee and
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
