Bentley, a charming little boy, exudes confidence, strength, intelligence, and an unmatched sweetness. He has a natural ability to brighten any room he enters.

His entrance into the world was marked by health, happiness, and the embodiment of new parents’ dreams: ten tiny fingers and ten tiny toes encapsulating their entire world. However, at just 4 months old, Bentley’s journey took an unexpected turn with his first seizure, signaling the onset of a challenging path for his family.

At 6 months old, a seizure lasting over an hour left them gripped with fear as they navigated through countless scans, IVs, and tests in search of answers. Initially dismissed as febrile seizures, the family persisted through multiple neurologists until they finally received a diagnosis: Dravet syndrome. Their perseverance led them to a compassionate fourth neurologist who provided a medication regimen tailored to Bentley’s needs.

Despite the diagnosis, Bentley refuses to let Dravet syndrome define him. Meeting his milestones on time and thriving, he demonstrates remarkable resilience, though seizures still pose challenges during growth spurts or illnesses.

The Dravet Syndrome Foundation has been an invaluable resource, equipping them with tools like the SAMi 3 monitor to enhance seizure awareness during Bentley’s sleep. Their dedication to research offers hope for a brighter future for all children facing Dravet syndrome.