In Episode 6, The Rare Remix welcomes Tami and Donnie, who recently became caregivers and guardians for Tami's younger sister, Lori. Born in 1968, Lori spent most of her life at home with parents who built their family around her care. After her father died and her mother's health declined, responsibility gradually shifted to Tami and Donnie.

They share what that transition looked like emotionally and practically: a mother learning that transferring guardianship did not erase her role as mom, a sister becoming the primary medical decision maker, and a couple reshaping retirement, marriage, home, and daily routines around full-time care.

The family had planned ahead through years of conversations, estate planning, trusts, guardianship, and financial arrangements. Tami and Donnie explain what helped, what remained difficult, and why families should share information and make plans before a crisis.

The conversation also makes room for the life inside the care: Lori's love of 1970s music, church, an accessible van, baseball trips, and the partnership that helps their household work. Rooted in Rett syndrome but relevant across diagnoses, this episode is for parents, adult siblings, spouses, and anyone planning for the future of a loved one with complex needs.

In Episode 5, The Rare Remix welcomes Allison and Brendan, parents to Anya and Clare. Clare was diagnosed with Rett syndrome in 2020, just as the world shut down, leaving their family to navigate life-changing news while clinics, schools, therapies, and in-person support were suddenly out of reach. Allison and Brendan share the realities of raising a child who runs, jumps, climbs, and explores, and why mobility does not necessarily make caregiving easier. They discuss constant safety planning, elopement and water risks, adaptive equipment and support systems that can mistake walking for independence, sibling dynamics, puberty, travel, and the practical solutions families share with one another. Allison also offers a powerful distinction between being a mom and being a caregiver: the emotional relationship of being Clare's mother alongside the hands-on work required to keep her safe and supported. Together, she and Brendan explain how perspective, routine, flexibility, humor, community, and connection help their family make room for both. Along the way, they share how parent networks, local disability communities, and Clare sMILES for a Cure have helped turn isolation into connection and advocacy. This conversation is rooted in Rett syndrome, but its lessons reach any parent, grandparent, sibling, educator, therapist, or caregiver supporting someone with complex needs. Everyone has their own hard, and no family should have to carry it alone.

In Episode 4, we sit down with Susan Norwell and Kourtney Barnum from Rett University to explore the transformative world of Augmentative and Alternative Communication (AAC).

As internationally recognized specialists in Rett syndrome, communication, and education for individuals with complex needs, Susan and Kourtney share their expertise on a wide range of topics, including AAC, eye gaze technology, low-tech and high-tech communication supports, literacy, classroom inclusion, and the importance of presuming competence. Together, we discuss what it truly means to give individuals the time, tools, and respect they need to communicate who they are at every age and every stage of life.

Whether you're an educator, therapist, caregiver, sibling, or family member, this episode offers practical insights and encouragement for supporting meaningful communication. While our conversation is rooted in the Rett syndrome community, the principles extend far beyond—to autism, rare diseases, medical complexity, other disabilities, and even neurotypical children who benefit from additional communication support.

At its heart, this episode is about access, dignity, inclusion, and ensuring every person has the opportunity to be heard.

Episode 3 features Dianne, mom to 8-year-old Dru, who lives with Au-Kline syndrome. We discuss the challenges of an ultra-rare diagnosis, navigating life with AAC, and the value of asking for help along the way.

Episode 2 features Karen, mom to 30-year-old Lynzie, who lives with Rett syndrome. We talk about the unique timing of Lynzie’s diagnosis, the challenges of making tough decisions in adulthood, and the importance of advocacy. Don’t miss this heartfelt conversation.

Bryan and Lindsey introduce The Rare Remix, share the story behind the podcast, and explain why they’re creating a space for real conversations, practical insight, and solutions for families navigating life with a new rhythm.