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 still filled with love.

Chris also introduces us to tools and communities that have been a source of support, including:

🔗 Project Sebastian: A nonprofit raising awareness and funding for Batten disease and other rare conditions 👉 www.projectsebastian.org

⚡️ BioRecharge Energy Enhancement Systems: Alternative wellness technology supporting cellular healing and energy 👉 www.biorecharge.net

💊 Mila’s Miracle Foundation: Advocating for individualized, gene-targeted medicine to treat rare genetic disorders 👉 www.milasmiracle.org

This episode is for any parent walking a rare or uncertain path — and for anyone who needs a reminder that purpose can rise from even the darkest days.

If this episode moved you, please rate, review, and share. You never know who needs to hear this story.

In this episode, I open up about the early years when first learned my son had special needs—and all the emotions that came with it: grief, fear, uncertainty. If I could sit with that younger version of myself, I’d tell her this...

In this heartfelt episode of Rocking the Difference, I sit down with an incredible mom Becky, and her two adult daughters, Hannah and Nicole, to honor the life and legacy of Breanna—their daughter and sister who had multiple disabilities, including blindness and mobility challenges, and who passed away three years ago. Together, we explore the deep love, joy, and challenges they experienced as a special needs family, and how Breanna’s presence shaped their bond.

We talk about the funny memories, the hard days, the strength Breanna unknowingly gave them, and what life looks like now without her physical presence—but with her spirit still very much alive. This emotional and uplifting conversation is a tribute to unconditional love, sisterhood, and the resilience of families who walk this unique path.

Tune in for a story that will move your heart and remind you that the love we give and receive knows no limits.