Growing up with Charcot-Marie-Tooth disease can often mean feeling different, isolated, or unsure of what the future might hold. But today’s youth have something many adults with CMT didn’t: a thriving community ready to remind them they are not alone.
So who better to reflect on that journey than the people helping lead the next generation?
We asked mentors from the Footprint Fellowship, Camp Footprint’s year-long leadership program supported by the American Camp Association’s Character at Camp Initiative, what they would tell their younger selves about living with CMT.
Their answers reveal something powerful: while CMT may be part of their story, so are resilience, friendship, confidence, and belonging. Most importantly, they remind us that community has the power to change what it means to grow up with CMT.
So we asked them to imagine one conversation: a chance to sit across from their younger selves and share everything they know now, the advice, encouragement, and perspective they wish they had when they were first learning to navigate life with CMT.
If you could tell your younger self one thing about living with CMT, what would it be?
Laurie:
Dear Laurie,
First, I want you to know just how resilient you will be in your life. You will face many obstacles, but hold tight to that positive attitude, it will carry you further than you can imagine. I know that you will struggle, you may even cry from time to time, but know that there are two very special little boys that will come into your life that will completely change and shape everything from that point on. These two little guys will empower you to really embrace your CMT. You will accept the fact that you need mobility devices, and not only will you wear your leg braces, but you will also wear them loud and proud. You will find a group of very special camp counselors, camp directors, and campers that will completely change the path of your life. You will join this group and become part of their wonderful world. They will uplift you and you in turn will support them in any way that you can. You will no longer be afraid to share your story, rather you will share your story with whoever wants to listen to you.
With love,
Your Funky Footed Self
Haley:
If I could sit across from my younger self, I would tell her to embrace her CMT and to prepare herself to meet some of the greatest people on this earth. I have been blessed my whole life to be loved by a family that knows what CMT is, and I have been even more blessed since to discover this evergrowing community. I am honored to be a part of this fellowship/grant program as a mentor and Camp Footprint as a counselor/cabin captain. Little Haley would have never believed me if I told her of the positive things that come from CMT. Don’t get me wrong. Living with CMT is not easy, and I struggle with it every single day. But thanks to the CMTA, I get to share those struggles, my anxieties, and my fears with others that I now get to call my friends. To the younger generation of CMTers, get involved! Don’t miss the opportunity to make the connections of a lifetime complete with endless knowledge surrounding CMT. I wish my younger self would have gotten involved sooner, and you have the chance to do just that.
Karli:
Little Karli,
How lucky you are to be surrounded by so much love and support. As you grow, continue to lean on your family and the people who love you. They will remind you of your strength when you forget it yourself.
One day, you’ll begin to understand why your body works differently from your siblings’ and your friends’. When that day comes, I hope you know there is nothing wrong with you. Your body simply has its own story to tell.
I’m so proud of you for giving yourself the grace you deserve and for never measuring your worth against anyone else’s. That gift will carry you through some of life’s hardest moments.
When you learn about your Charcot-Marie-Tooth diagnosis, don’t let it scare you. Let yourself feel whatever comes first, and then, when you’re ready, lean into that part of your identity. Learn everything you can about how your body works. The more you understand it, the less power fear will have over you.
One day, you’ll find a community of people who understand exactly what you’re going through. They’ll remind you that you’re never alone. You’ll get to work with kids who have walked a path much like yours. You’ll help them feel seen, and they’ll help you heal in ways you never expected. What begins as a diagnosis will become a source of purpose, passion, and pride.
You are so much more than what is happening to your body. But your CMT is part of your story, too. It will shape you into someone who is deeply compassionate, endlessly kind, and fiercely determined to make life better for others.
The three of us—you, me, and CMT—are going to be together forever. And somehow, that’s okay. Because together, we’re going to build a life that is full of joy, purpose, love, and people who see you exactly as you are.
I love you beyond words, and I always will.
Xoxo,
Grown-Up Karli
