In this deeply moving episode of The LCC Circle: Stories, Support, and Science, we sit down with the Tinker/Stewart family to share their journey with LCC/Labrune Syndrome — a path they never anticipated, yet now walk with extraordinary courage and connection.

From the first signs that something wasn’t quite right, to navigating the long road toward diagnosis, this conversation opens an honest window into the emotional, medical, and practical realities of living with a rare disease. The Tinker/Stewarts share what it felt like to search for answers, how they found community within The LCC Foundation, and the ways they continue to advocate for their child and others impacted by LCC.

This episode is about more than a diagnosis. It’s about resilience. It’s about family. It’s about redefining what strength looks like. And it’s about the power of community when the road feels isolating.

Whether you are a parent, caregiver, clinician, researcher, or supporter, this conversation will remind you that even in the rarest of circumstances, connection changes everything.

💜 Because no family should walk this road alone.

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