Life on a Different Planet: Parenting Through Rare Disease
Description
What’s it like to raise a child with a rare disease? In this episode of A Place of Yes, Heather connects with Jeff Ames, whose daughter Tessa lives with Dravet syndrome.
As rare disease parents, Heather and Jeff share the unique struggles and unexpected joys of raising a child in a world that feels so different from everyone else’s.
They discuss the emotional toll, the constant challenges, and the overwhelming love that defines their journeys. It’s a conversation about resilience, community, and what it means to live a life that few others can truly understand.
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