Episode 18: Defying the Odds: A Father’s Fight for His Son and the Rare Disease Community with Christopher Velona

Podcast: Rockin the Difference · Chandra Neal/Single Mom/Special Needs Mom/Special Needs Sports Program Board Member

Opublikowano: 2025-06-20

In this powerful episode of Rockin’ the Difference, I sit down with my dear friend Chris Velona — a devoted father, rare disease advocate, and founder of Project Sebastian, a nonprofit inspired by his son Sebastian, who was diagnosed with Batten disease, a rare and terminal neurodegenerative disorder. Chris shares his family’s emotional journey, the heartbreaking diagnosis, and how he chose to turn pain into purpose by creating a platform for awareness, connection, and hope. We talk about the emotional toll of caregiving, and what it's like to live day by day when the future is uncertain — yet stil...