Rare Parenting Book Coming Soon—Update: It’s Here!

A Personal Announcement from Rare Mamas Founder Nikki McIntosh

I’ve been holding something close to my heart…And now, I finally get to share it with you. I am so excited to tell you…I wrote a book for rare moms. It’s called Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease—a rare parenting book created to support rare moms like you. It’s a resource created specifically for rare disease mothers who are carrying the weight of complex medical needs, emotional fatigue, and constant advocacy. To learn more or buy the book link here: raremamas.com/book. It’s available wherever books are sold.

This book has been in the works for years—years filled with caregiving and advocacy, laughter and tears, learning and growing, late nights and early mornings. This journey began six, maybe even seven years ago. I wrote the manuscript, then the book proposal, found a literary agent, searched for the right publishing partner, and after nearly a year in production, it officially launches on September 23rd.

And now I finally get to invite you in.

Why I Wrote a Book for Rare Disease Moms

This book was born out of the hardest chapters of my life.

When my son Miles was diagnosed with a rare neuromuscular disease, I felt like the ground fell out from beneath my feet. We were told there was no treatment. No cure. That it was progressive. That it was the number one genetic cause of infant death. It was excruciating.

I was heartbroken, terrified, and completely unprepared.

And yet—there was no time to process.

I had to jump in and figure it all out while grieving and searching for hope. I was overwhelmed, afraid, and drowning in a sea of emotions, medical jargon, impossible decisions, and unanswered questions.

Along the way, I kept wondering: Why is this so difficult? Where is the guidebook for navigating a rare disease diagnosis? Where is the roadmap for rare parenting? Where is the rare disease parenting book?

I desperately wished someone had handed me a guide that said, “Here’s how to do this. Here’s how to survive. Here’s how to stay standing. And here’s how to choose hope.”

So, as I learned, I started writing everything I wish I had known as a new rare disease caregiver. Every lesson, every obstacle overcome, every hard-won piece of wisdom—I wrote it all. And somewhere along the way, I realized it wasn’t just notes.

It was a book.
A book for us.

Why I Felt Called to Write this Book

I never set out to become an author. But this book kept tugging at my heart. I kept thinking about all the rare mamas out there going through similar challenges—moms caring for medically complex children, feeling isolated, burnt out, or simply unseen.

I wrote it for the rare mama who’s still in shock and the rare mama who feels alone.
I wrote it for the medical mom who is staying up all night researching, advocating, and worrying.
The one who wonders if she’s doing it right, or doing enough, or if she’ll ever feel normal again.
I wrote it for the rare mama who’s been walking this path for years and is quietly running out of steam.

I wrote it for you.
For us.

This book felt like a calling. And while I am just a mom like you—juggling caregiving, exhaustion, medical appointments, and uncertainty—this book would not leave me alone.

I wrote during my son Miles’s procedures. I wrote in hospital waiting rooms during his first hip surgery. I wrote while recovering from a torn meniscus and again when I was laid up with back pain from years of lifting and transferring. I wrote through the fear, the overwhelm, the chaos. I wrote when I didn’t know what else to do but write.

It became my outlet, my mission, and ultimately—my offering to this rare disease community.

What’s Inside This Rare Disease Parenting Book

Let me tell you what you’ll find in this book. Rare Mamas offers strategies, strength, support, and sisterhood—a true companion and compass for rare disease parenting.

Inside, I share the exact tools, strategies, and hard-won wisdom I wish someone had handed me. This is not a textbook. It’s a lived-in, boots-on-the-ground guide for mothers of children with rare diseases, written by a mom who gets it.

There are 28 chapters, written over years of real-life experience as a rare disease parent. This is a rare disease parenting book resource for navigating all the twists and turns of caregiving for a child with a rare condition.

Here’s what’s inside:

• Mindset tools to help you stay grounded when fear takes over
• Guidance for navigating complex systems like healthcare, education, insurance, and finances
• Real talk on advocacy, medical decision-making, and becoming your child’s best expert
• Support for your relationships—with your spouse or partner, your other children, your extended family, and your rare village
• A full section devoted to you—your mental health, grief, identity, and the critical importance of self-care

I’m not a medical professional, therapist, or educator—but I’ve had to act as all of those things to keep my son safe and supported. If you’ve found yourself thinking, “I’m not qualified for this,” you’re not alone. But you are capable.

This book is built from the kind of caregiving wisdom that only comes from living it. From being up all night with a sick child. From pushing a wheelchair through a crowded waiting room. From filing insurance appeals and fighting for inclusion at school. From being the one who never stops trying.

You’ll walk away with:

• Tools for turning fierce love into meaningful action
• How to advocate effectively and diplomatically for your child
• Tangible strategies for navigating special education, state programs, hospital systems, and more
• Realistic, doable ideas for prioritizing your health—even when it feels impossible
• Encouragement, connection, and the reminder that you are not alone

While this may not be the manual for your child’s specific rare disease, my hope is that it becomes a manual for you—the rare disease mother carrying the weight of it all with love and determination.

I never expected my family’s story to unfold like this. But being here, walking beside you rare mamas, feels like exactly where I’m meant to be.

This book is my heart. And I hope it blesses you as much as writing it has blessed me.

How You Can Be Part of This Rare Mama Movement

I’d love for you to be part of this from the very beginning.

Over the next few months, I’ll be sharing sneak peeks, behind-the-scenes moments, and launch updates as we get closer to publication day.

Mark your calendar: September 23, 2025.
That’s when Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease officially launches on Amazon, Barnes & Noble, Bookshop.org, Books-A-Million, and indie retailers.

In the meantime, here’s how you can join in:

• Buy the book at www.raremamas.com/book
• Share this blog post with your rare disease community, support group, or a fellow rare mom who needs it

This isn’t just a book. It’s a battle plan.
It’s a sisterhood.
It’s our story.

We are Rare Mamas Rising. And we rise together!

Thank you for allowing me to share my heart—and this book—with you.
I truly cannot wait to place it in your hands.

In it together,

To listen to the podcast episodes about the book, check out Rare Mamas Rising Episode 50, where I announce the book and tell you what’s inside, Episode 51, where I talk about the making of the book, and Episode 52, where I read the book’s introduction chapter.