The Rare Hour – Premiere Show- Jessica Escorza

The Rare Hour is a weekly one-hour show airing Tuesdays at 1pm. It’s dedicated to the voices, stories, struggles, and victories inside the rare disease and special needs community, with host Christopher Velona, Director of Project Sebastian.

Christopher didn’t choose this journey — it chose him. His son, Sebastian, lives with Batten Disease, a rare, fatal neurological disorder that primarily affects children, causing progressive vision loss, seizures, cognitive decline, and motor skill deterioration.

Sebastian’s symptoms started at age 5; he was born in 2003. You Do the math.

Over the years, his family has experienced heartbreak, uncertainty, exhaustion, and
resilience that so many rare families know all too well.

The Rare Hour isn’t just about hardship. It’s about hope. It’s about solutions. It’s about the incredible people fighting every day — parents, caregivers, doctors, therapists, advocates, and warriors living with these conditions themselves.
The Rare Hour features real conversations. Some serious. Some inspiring.

And Yes…Sometimes you’ve got to laugh just to survive the chaos, so it will feature a little of that too.

Whether you’re a caregiver running on three hours of sleep, a family searching for answers, or someone simply wanting to better understand this world, The Rare Hour will make you realize you’re not alone. It’s a place for honesty, education, connection, and community.
So tune into the rare hour, Tuesdays at 1pm.