Скачать или смотреть 128. Navigating the Impossible: Real Talk on Rare Diseases with Nikki McIntosh

In this episode of Burnt Pancakes: Momversations, I had the honor of talking with Nikki McIntosh, author of Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease and the incredible woman behind the Rare Mamas community.

Nikki’s story begins when her youngest son, Miles, was diagnosed with spinal muscular atrophy and everything in her world shifted. She left her 18-year marketing career and stepped fully into caregiving, advocacy, and creating a place for other rare moms to feel seen and supported.

During our conversation, we dive into:
✨ What those first days after a rare disease diagnosis actually feel like
✨ How Nikki found purpose, community, and strength in the middle of fear and uncertainty
✨ The emotional and mental load of caring for a child with a rare or complex condition
✨ Why humor and storytelling matter so much during hard seasons
✨ Practical tools from her book for navigating medical systems, advocating for your child, and protecting your own well-being
✨ The message Nikki hopes every lost or overwhelmed rare mama hears today

Even if you’re not walking through a rare disease journey, this conversation is full of encouragement for any mom who’s ever felt exhausted, stretched thin, or alone. Nikki’s honesty and heart are such a gift, and I know so many moms will feel less isolated after listening.

Resources I Mentioned:
– Her book: Rare Mamas by Nikki McIntosh - https://amzn.to/4ra235r
– The Rare Mamas community + podcast - https://raremamas.com/
– Instagram: @rare_mamas

If this episode touched you, please share it with a friend who might need the reminder that she’s not the only one, and that hope can live right alongside the hard.