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.
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.
