By: Diane, living with CMT 

I’d give you my feet if I could. That’s what my strong, stoic mother told me as she struggled to watch me walk as a teenager.

I was a natural athlete growing up. I loved running and excelled at it. One day while running, I blew out my ankle. While I expected to recover quickly and get back on the track, my ankle and legs got weaker, not stronger.

One doctor’s appointment led to another and another until eventually, I was diagnosed with CMT, a genetic nerve disease that causes progressive muscle weakness. As my feet and lower legs continued to deteriorate, so did my confidence. I tried to hide my CMT, but I couldn’t conceal that I walked with a limp. My classmates started making fun of me, and I began to withdraw.

I knew how hard it must have been for my mother (who didn’t have CMT) to see me in pain. It was then that I decided I would never have children. I didn’t want another child to experience what I was going through, and I certainly didn’t want to have to watch my child re-live my struggles.

I met my husband when I was 28, and we were married four years later. He was divorced with two young children, so I became a stepmom, loving his kids as if they’re my own.

When I turned 30, I suddenly felt a strong yearning to have a child. I knew I had a 50% chance of passing CMT on to a baby. For a moment, I wondered if I should play the odds. But that angry teenager inside me resurfaced. While I deeply respect women with genetic diseases who choose to have kids, I chose to stop CMT in my family. I don’t have any children who will have to make the same difficult decisions about motherhood that I’ve had to make. But the truth is, no woman ever should.

I’d be lying if I said I didn’t feel “substandard” from time to time because I don’t know what it’s like to have children myself. What’s really heartbreaking is not leaving a part of me in this world.

Today as I near my 40th birthday, my CMT is progressing. I have difficulties breathing and am starting to get vocal cord fixation. While I still walk without braces, my hands easily fatigue when working, making it difficult for me to do my job. When I think about the future, I’m still optimistic because of the research underway by organizations like the CMT Research Foundation to stop CMT. I remain hopeful that we’ll find a treatment during my lifetime, and I’m at peace with the decisions I’ve made about my motherhood journey.

The author, who we’ve named Diane, has asked to keep her identity anonymous in respect to her family. She and her husband are just getting comfortable telling their story for the first time. However, they felt this story was too important, and CMT too urgent, to remain silent. 

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Help Find Treatments for CMT

While no treatments or cures currently exist for CMT, the science to change that does. Your donation to the CMT Research Foundation will fund cutting-edge research that’s solely focused on drug development, so no woman ever has to choose between ending CMT and becoming a mother. Together, we can change the course of CMT during our lifetime — and for every future generation.