Project Sebastian was born out of love, struggle, and an unshakable commitment to family. My son, Sebastian, was diagnosed with a rare disease that changed the course of our lives forever. Suddenly, we were thrown into a world of uncertainty, endless medical appointments, and few answers.
Families like ours often face years of missed diagnoses, the heartbreak of losing abilities like speech or vision, and the constant search for therapies that may never come. We quickly learned what so many families discover—the rare disease journey can feel isolating, overwhelming, and often invisible to the world around us.
But Sebastian’s story is not just about hardship. It’s about resilience, courage, and the power of community. Watching him face each day with strength inspired us to turn our family’s fight into a mission: to support other families walking the same path.
Through Project Sebastian, we honor the warriors battling rare diseases, lift up the families who stand beside them, and provide resources and hope where systems often fall short.
Our mission is simple yet profound: to bring hope, honor, and healing to every family navigating the rare disease journey.
