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Rare Mamas

Rare Mamasicon

by Nikki McIntosh

Publisher
Wonderwell Press
Publication
Sep 10, 2025
Format
Paperback/Softback
Illustrated
No
Price
$21.95
Dimensions
6 x 9 x 0.86 in
ISBN
978-1963827217
ASIN
196382721X
Pages
344
Age
Adult 18+
Category
Family & ParentingHealth & FitnessSelf-Help

Rights Sold

🌍 World Wide Rights Available

Description

A manual for mothers of children with rare diseases, informed by firsthand experience and fueled by love

When your child is diagnosed with a rare disease, the world shifts beneath your feet. Answers are scarce. The path is unclear. And you feel impossibly alone. You are not alone. Millions of mothers share your journey, but until now, there's never been a resource crafted just for you.

Rare Mamas is your lifeline, a heartfelt, practical, and empowering guidebook specifically created for mothers of children with rare diseases—mothers like you, who carry a fierce love through the unknown.

With more than a decade of lived experience, Nikki McIntosh, founder of the Rare Mamas® community and mother to a child with a rare disease, wraps her arms around every rare mom who sat in a doctor's office, heard life-altering news, and stared down a road they never expected to walk. With raw honesty, hard-won wisdom, and sisterly compassion, she offers the book she desperately needed when her own son was delivered an earthshaking, rare diagnosis at eighteen months old.

This book is part companion, part tactical guide, and part power source. Inside, you'll discover how to:

• Harness the power of love and transform it into meaningful action

• Cultivate courage and resilience—for you and your family

• Navigate complex medical, educational, and financial systems

• Advocate effectively for your child

• Find healing, humor, and hope

• Connect to a sisterhood that understands

• Take care of mama (that's you!)

When love calls, a mother answers. Whether you're newly diagnosed or battle-worn, Rare Mamas will ignite your inner fighter, equip you with hope and strength, and empower you to rise to the call of rare parenting.

Because rare disease doesn't come with a manual. It comes with a mother who never gives up.

Awards & Endorsements

Endorsement

“Rare Mamas is more than a book; it’s a lifeline for parents navigating the uncharted territory of raising a child with a rare disease. Nikki McIntosh has taken her personal experience and transformed it into a powerful, practical guide filled with care, wisdom, and actionable strategies. Her voice is one of strength and hope, offering a much-needed sense of community for those who often feel alone in their journeys. This book is an essential resource, and I believe it will make a real difference for so many families.”

—Montel Williams, TV host, podcast host, and author


Endorsement
“As a TV producer who tells the stories of rare families—and the mother of a child with a rare disease—I only wish this book had existed when we began our journey. Rare Mamas is the kind of honest, compassionate support every rare parent deserves.”
—Carri Levy, rare mom, co-creator and senior producer of the series Behind the Mystery: Rare and Genetic Disease
Endorsement
“Rare Mamas is the anchor and compass parents need after receiving a life-changing diagnosis for their child. There hasn’t been a roadmap to deal with such complexities . . . until now. It offers the vital guidance, unwavering support, and a deep understanding that will empower you to navigate the unique and challenging journey of rare disease. Rare Mamas isn't just a book—it's the lifeline you've been desperately searching for.”
—Brittany Cocilova, supervising producer of the series Behind the Mystery: Rare and Genetic Disease

Endorsement
“As a rare disease patient, I’ve seen firsthand the relentless advocacy my mom had to shoulder. This book is the guide she deserved but never had.”
—Ilana Jacqueline, rare disease patient and author of Medical Gaslighting and Surviving and Thriving with an Invisible Chronic Illness

Endorsement
“Nikki McIntosh wrote the book we’ve all needed with the power of retrospect as well as a pithy gaze at her family’s life now. She knows that rare parents enter this rare life at diagnosis but never leave, because our children can’t. Nikki reminds us that the energy of connection will give us endurance, and love will fuel our resilience when we forget to live for ourselves and give everything we can for our child. What I appreciate most about this book is the practical—giving us reminders, heads ups, and answers when we ask what now? In my own Rare Mama journey, I learned as I went alone. I wish I’d had this book earlier.”
—Patti M Hall, author of Loving Large: A Mother’s Rare Disease Memoir

Endorsement
“Rare Mamas is the book I wish I'd had when my daughter got her diagnosis, when I was feeling overwhelmed, when I was scared, and when I felt isolated. Nikki shares so much wisdom in the voice of a trusted guide, who's also a cheerleader and best friend. Knowing there are others traveling a similar path provides the dose of courage we all need when our worlds are turned upside down by a rare disease diagnosis. From practical strategies to emotional support, Rare Mamas is an indispensable manual to refer to when you need a compassionate guide who truly understands. This book doesn't just offer solutions—it offers validation, inspiration, and the reassurance that even in the rarest of journeys, you are never alone.”
—Jessica Fein, author of Break Taking: A Memoir of Family, Dreams, and Broken Genes and host of podcast I Don’t Know How You Do It

Endorsement
“Rare Mamas is the book I wish I'd had when my daughter got her diagnosis, when I was feeling overwhelmed, when I was scared, and when I felt isolated. Nikki shares so much wisdom in the voice of a trusted guide, who's also a cheerleader and best friend. Knowing there are others traveling a similar path provides the dose of courage we all need when our worlds are turned upside down by a rare disease diagnosis. From practical strategies to emotional support, Rare Mamas is an indispensable manual to refer to when you need a compassionate guide who truly understands. This book doesn't just offer solutions—it offers validation, inspiration, and the reassurance that even in the rarest of journeys, you are never alone.”
—Jessica Fein, author of Break Taking: A Memoir of Family, Dreams, and Broken Genes and host of podcast I Don’t Know How You Do It

Endorsement
“Rare Mamas is a heartfelt and practical guide that offers clarity, strength, and unwavering support for parents facing the overwhelming journey of rare disease. The author is incredibly well-spoken and relatable, drawing from lived experience and deep empathy to speak directly to the hearts of caregivers. With compassion and wisdom, she shares empowering strategies that help mothers feel less alone, more equipped, and grounded in their inner strength as they advocate for their children. This book is a must-read companion for any parent navigating this complex path.”
—Carol Gelbard, LCSW, psychotherapist and former director of emotional wellness at the Neuromuscular Disease Foundation

Endorsement
“Rare mamas are less rare than we would like them to be. Millions of rare families manage everyday life with a level of uncertainty that would scare most. But as Nikki tells us in her beautiful book, Rare Mamas are a special breed, a group that will never stop fighting. We can all learn so much by just watching them live; they are true warriors for health and happiness!”
—Dr. Katia Moritz, director of documentary Undiagnosed and parent to two rare young adults

Endorsement
“This book is the companion I wish my friend had when her child was diagnosed with a rare disease—a source of support and a roadmap all in one.”
—Brittany Daniel, actress

Endorsement
“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


Author(s)

Nikki McIntosh

Nikki McIntosh

Nikki McIntosh is the founder of Rare Mamas®, a resource and community dedicated to empowering mothers of children with rare diseases, and host of the "Rare Mamas Rising" podcast. Her mission stems from the profound need she felt after her son was diagnosed with a rare disease, fueling her with a passion and purpose to offer a lifeline of hope and connection to other rare moms. Nikki is a sought-after speaker and a trusted voice in the rare disease space. From national conferences and patient advocacy group gatherings to biotech industry meetings and media interviews, Nikki passionately advocates for the rare disease community. She lives in Southern California with her husband, Tony, and their sons, Mason and Miles.

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