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Explore honest stories, helpful resources, and real-life guidance for families navigating rare disease, disability, caregiving, advocacy, and life after diagnosis.
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From Sister to Caregiver: A Conversation with Tami and Donnie
In Episode 6, we sat down with Tami and Donnie, who recently became guardians and primary caregivers for Tami's youngest sister, Lori. Lori has Rett syndrome and recently celebrated her 58th birthday.
Their conversation gave us a rare look at sibling caregiving across an entire lifetime - from growing up together, to helping aging parents, to planning the transfer of guardianship, to building a new daily life after the passing of a longtime parent caregiver.
How We Optimize AI to Manage Our Rare Life Remix
From Medicaid maps to insurance appeals, appointment follow-up and planning for the future, we use AI to make complicated work more manageable—without handing over human decisions.
Have a Story to Share?
We’re always looking for parents, caregivers, advocates, medical professionals, and disability community leaders with honest stories and helpful insight to share.
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