Hi, I’m Nikki McIntosh, a rare mama just like you. My son Miles was diagnosed with spinal muscular atrophy (SMA), a rare, neuromuscular disease at the age of eighteen months old. Probably much like you, the role of rare disease mom was something I didn’t see coming.

When you become a mother, there’s something so natural, so innate, so instinctual about protecting your child. All those phrases—mama bear, dragon mother, etc.—hold some truth. We have an animal-like instinct to protect our children. But what happens when we can’t protect them from the grips of a disease, disability, or disorder? What then?

This journey threw me into a jungle I never expected and had never been before. My inner fighter was awoken.

Along my way, I’ve dealt with the gamut of emotions, obstacles, roadblocks, trials and errors, no’s, hurdles, and falls on my face—but sister, I’m still standing. I figured, What’s the use of going through all of this if I can’t use it to help someone else? What if I could prevent you from having to go through some of those things, or at least prepare you for them? Looking back now, I can see there are steps that can be taken to move you from fear to bravery. But in the beginning, it’s hard to know how to get there without having a guide. So it would be my absolute honor to steward you through your journey. Mama, I’ve got so much to tell you.

I believe that like me, you have a fighter within you, though you may not know it yet. Maybe you just received your earth-shattering diagnosis, and maybe you don’t even feel like a whole person, let alone like a brave fighter.

I see you, friend. And I see a fighter within you. Believe me, she’s in you. Let’s create a community of brave rare mamas supporting and encouraging one another. 

Let’s awaken your inner fighter and get to rising up!