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The Battle of CMT

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By Damian Barnes*

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I’m Damian Barnes and I’m 17 years old. I have
CMT Type 2. I was diagnosed with CMT around 2012 and have had
several surgeries on my left foot and left ankle.

The daily battles of CMT can be tough. However, don't just assume nothing can be done.
If you truly love to do something, you will find a way to do it, no matter what stands in your way.
I played football for six years, but then my doctor told me I should probably not be in contact sports. So
I switched to go-kart racing, but a year or so after I started, I had a major surgery on my foot. I wasn't
able to get back in the kart and it just sat around. Eventually we sold it.
Since I couldn't race or play football, I began wondering about what I could do with myself. A kid
in my neighborhood—Braydon, a great kid and a fast learner—asked me if I could help him train for
football and baseball. I saw this as an opportunity to become involved again. For the last two years,
I’ve worked with him every time he wanted to train for football or baseball. I taught the kid everything
I know about both sports. This was my way of getting back in touch with the things I loved to do. So even
though I can’t play football, I can teach kids who are interested in learning how to play and also teach them
some life lessons along the way.

Even if I didn't run, I was still worn out from training Braydon by the time I got home, and my legs were aching, but I
didn't want to give up practicing with the kids. I kept adding padding or whatever I needed to make my leg brace as
comfortable as it could be. Eventually I got the adjustment just right and was able to continue to do what I wanted
to. So even though there may be some pain and tears along the way, you can find ways around this disease. It can
be tough. It will make a person want to give up; however, if we give up we let the disease win. We have to fight.
We have to find ways to make ourselves comfortable. We have to take a stand and we have to say we can instead
of saying we can’t.
Keep strong, keep fighting, and keep positive. Don’t let this disease get you down because it's tough.
Keep positive because you have passed all of the disease’s test at this point in life.

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