March 2026

  • When Safety Is Not Enough: The Hidden Cost of Aging Out with a One on One

    When Safety Is Not Enough: The Hidden Cost of Aging Out with a One on One

    After 22 years of living with Dravet Syndrome, you develop a sense of normalcy. Seizures happen. You manage them. You move on with your day. You build a team to manage your warriors day like  neurologists, therapists, nurses, educators, family (or whoever is still standing beside you). Life becomes structured around medical protocols, emergency plans,…