Episode 05 - Rett Syndrome, Mobility & Caregiving: A Conversation with Allison and Brendan
In Episode 5, Allison and Brendan share about their life with their daughters, Anya and Clare. Clare was diagnosed with Rett syndrome just as the world shut down in 2020 for COVID. From the less-visible demands of raising a mobile child with complex needs to Allison's powerful distinction between “momming” and caregiving, their story reminds us that everyone has their own version of hard.
EPISODE SUMMARY
Allison and Brendan share how their daughter Clare's Rett syndrome diagnosis arrived in 2020 at the same moment clinics, schools, therapies, and in-person support systems were shutting down. They describe the shock of receiving life-changing news in isolation, the uncertainty of trying to build a care plan through screens and phone calls, and the online connections that helped them begin finding trusted doctors, resources, and families who understood.
Clare runs, jumps, climbs, and loves to be outside. Her mobility is a gift, but it also brings constant planning around elopement, water safety, travel, home safeguards, and everyday environments that were not designed for her needs. Allison and Brendan explain how insurance and support systems can mistake walking for independence, making equipment and services harder to secure even when the need is real. Their experience makes one point especially clear: mobile does not mean easier.
The conversation also explores life as a whole family. Allison and Brendan talk about protecting one-on-one time with Anya, allowing the sisters to have an ordinary relationship, and adapting plans instead of expecting every day to look the same. Allison's distinction between being a mom and being a caregiver becomes one of the episode's most powerful ideas. “Momming” holds the relationship, comfort, and joy; caregiving includes managing hygiene, dressing, safety, and hands-on support Clare needs. Separating the two in her mind helps Allison move through hard moments without letting the work erase the bond beneath it. Brendan anchors the family with the important values of routine, flexibility, perspective, and humor.
Throughout the episode, practical community support matters as much as any formal resource. Parent groups and social media offer lived-experience answers about equipment, travel, puberty, and the years ahead. Allison now helps newly diagnosed families through the International Rett Syndrome Foundation, while the family also builds connections and raises awareness through Clare sMILES for a Cure. Their story reaches beyond Rett syndrome: every family has its own version of hard, and sharing what we learn can make the road less lonely for parents, grandparents, siblings, educators, therapists, and caregivers across the complex-needs community
RESOURCES & LINKS
In the first episode of The Rare Remix Podcast, we're sharing our story. You'll learn about Ava's Rett Syndrome diagnosis, how our lives changed overnight, and the journey that inspired us to create Rare Remix. We discuss the challenges, lessons, and unexpected blessings we've experienced along the way, and why we're passionate about helping other families feel informed, supported, and less alone.