“With raw honesty and emotional vulnerability, Nikki opens a door into the journey of being a rare mama and guides readers through complex emotions and challenges. She lights the path for other rare mamas with grace, wisdom, and a deep well of compassion. Her empowering, and practical advice provides guidance in navigating the often-overwhelming journey of rare disease care. Nikki writes from the trenches. Her voice is authentic and fierce, yet loving and compassionate. Rare Mamas is not just a book . . . it is a lifeline for rare mamas!”

Melissa Hioco, director of community engagement for STXBP1 Foundation, and Rare Mama to Alex