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In this episode, I sit down with Nikki McIntosh, founder of Rare Mamas® and host of the Rare Mamas Rising Podcast. Nikki is also the author of Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease, a book born from her family’s journey after her son’s rare diagnosis.

We talk about the shock of those early days, the fight for treatment, and what it’s like raising one child with a rare condition and another without. Nikki shares how she turned pain into purpose, creating resources and community to give other moms strength, strategies, and hope.

This conversation is full of those “me too” moments—reminders that we’re not as alone as we sometimes feel. Nikki and I also touch on the rollercoaster of emotions that come with parenting in the world of rare disease, from fear and grief to joy and fierce determination. Her story is a powerful example of what it looks like to fight for your child while still choosing to build a meaningful, hope-filled life.

Resources Mentioned

• Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease 
• Rare Mamas community
• Rare Mamas Rising Podcast
• Cure SMA (patient advocacy group)

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Website: https://www.kararyska.com/

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