Welcome to My Blog – Not Your Typical Diagnosis

Hi, my name is Iris Schultz, and I’m the mom of 7-year-old Hunter, who has a rare disease called CMT4B3. Along this journey, I’ve become not only an expert on Charcot-Marie-Tooth Disease Type 4B3 but also an unofficial expert on just about everything related to raising a child with special needs. That list includes health insurance, research, fundraising, therapies, schooling, and—let’s be real—so much more.

I’m starting this blog for a few reasons:

1. Because everyone keeps telling me to write a book. (Yeah, like I have time for that.)
   But every time I share my story with someone, they say, "You should really write a book about all this." And while I can’t promise a book anytime soon (hello, endless to-do list), I figured a blog might be the next best thing to share what I’ve learned.

2. Because when I started this journey, I felt lost.
   There are so many rare disease parents I talk to who feel like they’re just starting the journey and don’t know where to turn. I’ve gotten countless questions about where to begin, what steps to take, and how to navigate this maze of therapies and research. This blog is my way of giving back to those who might be feeling like I did when this all began—confused, overwhelmed, and alone.

3. Because I’ve learned so much from other parents.
   One of the greatest gifts of this journey has been the parents I’ve met along the way. We swap advice, share our struggles, and celebrate each other’s wins. It’s a community that has taught me more than I ever could have imagined, and I want to pay it forward. I want to share what I know with as many people as possible, especially those who might be in the early stages of this journey.

4. Because I want to share more of my story.
   Life with a child who has a rare disease isn’t always easy. While I’m an inherently optimistic person, I also know how hard things can get. Science is advancing at a rapid pace, and there’s hope on the horizon—but that doesn’t make the tough moments any easier. I want to share the emotional ups and downs of our life with Hunter, because while there are a lot of wins, there are also days when everything feels hard. And those moments, big and small, deserve to be shared too.

So, welcome to my little corner of the internet. Here, I’ll share everything I’ve learned along the way—the good, the bad, and everything in between. Whether you're a parent just beginning your rare disease journey or someone who’s been in the trenches for years, I hope this blog will feel like a community—a place where you can laugh, cry, and, most importantly, feel understood.