Medicaid & Waivers

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.