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  • Writer's pictureKaterina

Living with CMT - Riley's Story

Hey y’all, I am Riley Williams! I was born and raised in the deep south of Baton Rouge, Louisiana. I am 18 years old. I attend Southeastern Louisiana University with hopes to obtain a degree that will help me land my dream job. What is my dream job you might ask? Well, it would be to work for a non-profit that focuses on helping kids become empowered by their disability. But, it is quite funny how this dream of mine came to be.

Diagnosis of CMT

At the age of 13, I was diagnosed with Charcot Marie Tooth disease. After this diagnosis, I was left hopeless, discouraged, confused, and angry. All I heard were the words progressive, incurable, and unknown. I always struggled with fear as a kid. I was scared of the dark, being alone, and pretty much everything in between. But, the fear I felt with this diagnosis crippled me.

One night, in particular, I was praying to God as I was overwhelmed with fear and the unknown of this entire progress. As I began to pray, I suddenly felt a sense of peace arise. I was reminded that our father goes before us and fights on our behalf. This gentle reminder left me with so much joy and an overwhelming sense of fearlessness.

A Beautiful Purpose

This newfound joy granted me a life of newfound adventure. Two years after my diagnosis, I hopped on a plane and went to a week-long summer camp for kids with CMT. Okay, let me clarify, I didn’t “hop” on a plane. I cried the entire plane ride and pretty much shook the entire car ride to camp. But, I faced my fear, stepped out of my comfort zone, and attended Camp Footprint.

It was the best week of my life, like seriously. I felt understood, capable, purposeful, and thankful. I felt honored to have been diagnosed with CMT. It was the strangest feeling in the world. In two years my prayers completely changed. I no longer prayed in fear and confusion but in confidence and purpose, when it came to CMT.

Throughout the years, I have become more and more involved with the Charcot Marie Tooth Association. The more I got involved the more it became evident of the purpose and plan God has placed on my life. It is to ensure that others with CMT feel the same empowerment, purpose, and fulfillment that I feel towards my CMT. This feeling never came because of something I did, but instead of the things God did. He took something so destructive and intimidating in my life, and turned it into my motivation, reason, dreams, and future. How beautiful is our God?


“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”

Isaiah 41:10

“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”

John 14:27

“Perhaps you were born for such a time as this.”

Esther 4:14

“Let it empower you.”

Riley Williams

Riley Williams attends Southeastern Louisiana University and is majoring in Child and Family Consumer Sciences. In her free time, you can most likely catch her shopping, watching Gilmore Girls, getting ice cream with her friends, or spending time with her family.

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