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Family & Marriage

Strong families are built one day at a time. Find encouragement and practical support for relationships, siblings, caregiving, and life beyond the diagnosis.

This page is still being remixed.

We’re building this space between appointments, school meetings, snack requests, podcast planning, and real life.

In other words: we’re still parents living the remix.

Check back soon — this page is coming together.

PODCAST EPISODES

Episodes to help you feel informed, supported, and a little less alone.

Podcast

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 04 - Communication & Education: A Conversation with Susan Norwell and Kourtney Barnum

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 03 - Au-Kline Syndrome: A Conversation with Dianne

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.

Episode 02 - Rett Syndrome: A Conversation with Karen

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.

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.

ARTICLES & STORIES

Helpful articles and real-life stories to guide you through your journey.

Articles

Back-to-School Resources for Rett Syndrome

For many families, the start of a new school year is filled with excitement. Fresh school supplies, new teachers, and the promise of new friendships make it a season of anticipation.

For families of children with Rett syndrome, however, back-to-school often brings a very different set of emotions and challenges.

We’re here to help.

Social Games & AAC for Eye Gaze Users

Social games can be a great way for an eye gaze user to engage with their peers. All it takes is a little creativity and the willingness to do things a little different.

Au-Kline Syndrome: A Conversation with Dianne

In Episode 3, Dianne shares how her daughter Dru’s ultra-rare Au-Kline syndrome diagnosis led their family to community, advocacy, early specialist care, and AAC, reminding us that rare families often learn, adapt, and advocate together.

Rett Syndrome: A Conversation with Karen

In Episode 2 of The Rare Remix Podcast, we were joined by Karen, a single parent of three: 15-year-old twins Christian and Caden, and 30-year-old Lynzie, who has Rett syndrome.

Rett syndrome is a rare neurodevelopmental disorder that can cause developmental regression, loss of spoken language, motor impairments, and reduced functional hand use. Abilities and support needs vary, but many people with Rett syndrome require significant assistance with everyday activities.

How We Optimize AI to Manage Our Rare Life Remix

From Medicaid maps to insurance appeals, appointment follow-up and planning for the future, we use AI to make complicated work more manageable—without handing over human decisions.