Episode 05 - Rett Syndrome, Mobility & Caregiving: a Conversation with Allison and Brendan

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.