Episode 01 - Introducing The Rare Remix Podcast
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.
EPISODE SUMMARY
In the very first episode of The Rare Remix Podcast, Lindsey and Bryan share the story behind Rare Remix and why they felt called to create a space for families navigating rare disease, disability, caregiving, and all the unexpected challenges that come with them.
They talk about their daughter Ava's Rett Syndrome diagnosis, the questions they faced in the early days, and how their family's life changed in ways they never could have anticipated. From navigating medical systems and therapies to rethinking finances, marriage, work, and everyday routines, they discuss what it has looked like to "remix" their life while building a future filled with hope.
This episode is an introduction to who they are, what Rare Remix stands for, and the conversations listeners can expect in future episodes. Whether you are newly diagnosed, years into the journey, or supporting someone you love, this podcast is a reminder that you do not have to figure it all out alone.
RELATED EPISODES
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.