Raising Rare

Rare Mamas: THE Field Guide for Navigating Your Child’s Rare Disease


Listen Later

Five years ago, we first spoke with Nikki McIntosh. In this episode, Nikki returns to share her journey as a mother of a child with spinal muscular atrophy (SMA) and the profound impact of clinical trials on her son’s life. Miles is growing up and has started playing wheelchair tennis. Nikki shares the joy this brings to her.

Nikki also discusses the emotional roller coaster of navigating rare diseases, the importance of community support, and her new book, 'Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease.' The conversation and the book highlight resilience, advocacy, and the need for actionable strategies for parents facing similar challenges.

https://raremamas.com

...more
View all episodesView all episodes
Download on the App Store

Raising RareBy Raising Rare

  • 5
  • 5
  • 5
  • 5
  • 5

5

7 ratings