School & IEP Advocacy

In Episode 10, Sarah joins us to share life with her daughter, Aleah, who has Rett syndrome. We talk about the journey of Aleah’s diagnosis, appealing Medicaid denials, and making room for camp, costumes, and everyday joy. We also discuss caring for a child while facing her own cancer diagnosis, learning to accept help, and finding a community that shows up.

In Episode 09, Staci and Nate share about life with their family and daughters McKenzie and Amelia. The family first learned of Amelia’s Down syndrome diagnosis at birth. They talk honestly about communication, elopement and safety, public reactions, community support, and why the diagnosis may be the least interesting thing about her.

In Episode 08, pediatric physical therapists Emily, Brittney, and Katelyn share practical ways caregivers can protect their bodies during lifts, transfers, floor work, and everyday care. They also discuss equipment, individualized treatment, emerging therapies, and why pediatric PT means supporting the whole family.

In this mini-episode, Declan and Liam share what it is like to have a cousin with Rett syndrome, from communicating through eye gaze to creating tools with a 3D printer and finding familiar lessons in a book they read at school. Their perspective is a simple reminder that disability may change how someone participates, but not the need to play, connect, and belong.

In Episode 6, Tami and Donnie share how they became caregivers and guardians for Tami's younger sister, Lori, after decades of care by her parents and the recent death of their mother. Their story explores sibling caregiving, guardianship, estate planning, and the difference between having a plan on paper and living it every day.

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.

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).

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.

In Episode 2, we sit down with Karen, a mother whose daughter Lynzie was diagnosed with Rett syndrome in 1999. Karen shares her family's journey through diagnosis, advocacy, respite care, and the challenges of planning for independence. From annual cruises and hard-won milestones to finding support before the days of social media, this conversation is filled with wisdom, honesty, and hope for families navigating life with a rare disease.

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.