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CMTA Kids' Page

 

Welcome to CMTA Kids Page! CMT can be hard to deal with at any age, but if you’re young and you have CMT, well, you know that sometimes it can really be difficult to keep up with the other kids and do the things they do.

Our new friend, Archy, has just joined us, and through his adventures, he will be explaining CMT to you and suggesting things you can do to make living with it easier.

And we’ll have some fun with Archy because, no matter what age you are, it’s important to find ways to have fun.

That’s what the kids on this page have done. They have their own special ways of having fun and meeting the challenge of having CMT, and you can, too!

If you’d like to share your story about what it’s like to have CMT, send it and a digital photo to kidspage@charcot-marie-tooth.org. Or you can mail your story and a photo to the CMTA, 2700 Chestnut Street, Chester, PA, 19013. (We will not return photos unless you enclose an SASE.)

   
   
 
   There Is Hope

by Mark Skoog

     
 William Welsh Standing Out with CMT

by William Welsh

     
 Payton Rule I'm Not Too Limited

by Payton Rule

     
 Christina O'Bryan How My Life Has Changed!

by Christina O'Bryan

     
 Amy de Silva A Singer in the House

by Amy de Silva

     
 Haley Dixon My Life with CMT

by Haley Dixon

     
 Latifa Daud It's All Happening Too Quickly!

by Latifa Daud

     
 Scott Zoeller Signs of Courage: My CMT Story

by Scott Zoeller

     
 Gina Barnhill Gina B. With CMT

by Gina Barnhill

     
 Keenon Ford Werling CMT: A Blessing and Minor Obstacle

by Keenon Ford Werling

     
 Yohan Bouchard Thoughts on CMT

by Yohan Bouchard

     
 Archit Khanuja “I’m Different, Accept It”

by Archit Khanuja

     
 
 
  Archy Joins the CMTA
 Archy
 
 

My name is Archy. I’m a turtle, but I’m a little different. My mother says that makes me special, but sometimes I just feel different. My feet are shaped funny with a high arch (that’s why my Mom named me Archy) and I walk on my toes.

Most turtles are really flat-footed and kind of thump down when they walk. I can’t get my heels down, so I get teased for being a sissy and walking on my toes. When you’re little, it’s not fun to be different. I’m not sure if it’s ever going to be fun to be different, but my parents tell me it will get better. I sure hope so.

The one place I really feel like I’m special is in the water. When I swim, no one can tell I’m different. In fact, I think my arched feet actually make me go faster. I’m on our school’s swim team and I can even dive pretty well, so no one teases me when I’m in the water.

I’m also fairly smart, so the teachers are nice to me and even let me take a little longer to get from one place in school to another. I do all my homework and really study hard to make my parents proud of me. If I can’t be a super star athlete, I can be a super star student.

Still, none of this makes it any easier to deal with the bullies in our school. You might think all turtles are quiet and well-behaved animals, but it’s not true. The biggest and the dumbest of us are bullies.

I get abused on the school bus and during recess. I don’t mean physically abused, but they do call me names and they pick on me and anyone that befriends me.

It’s very hard to take. Sometimes, I get pretty upset about it all. I pull my head inside my shell and won’t come out for a long time. I have to get up my courage to come out of my shell and face the kids again.

The only reason I can face up to my bullying is that my Mom and Dad are really great and they really love me. So does my older sister, Tara. They remind me that I’m a special kid and that I can do great things.

In fact, they make me feel sorry for the turtles who bully me because they point out that they aren’t great students and they don’t have loving families. So, I get reminded of how lucky I am, in spite of my weird feet, to be so loved.

Just the other day something really special happened! I met a lady named Tina and she thought my funny shaped feet were so great. She was really happy that I had these high-arched feet because she said she does, too! Can you imagine? Well, she has something called Charcot-Marie-Tooth disorder and that makes her feet pull up into a high arch just like my feet do.

Even better was the fact that she wanted me to be the mascot of the kids’ page of the CMTA. Suddenly, I really was going to be special. My face was going to be on a web site and no one would think my feet were silly; they would have the same kind of feet. This is by far the best thing that has ever happened in my life.

So, here I am now, sitting on the web site and catching the eye (or so I hope) of kids, who, like me, are a little different. I guess I really want kids to know that it’s okay to be different and it’s okay not to like being different, sometimes. I work hard at doing what I can do really well and not worrying too much about the things I can’t do. I’m slow, but I’m steady.

You’ve all seen that story about the tortoise and the hare…well, I’m very much like the tortoise. I won’t win any races of pure speed, but when smarts come into play, I’m a sure winner. That’s okay with me. "Win when you can; lose when you must; and always try your hardest."

That’s the lesson my parents taught me and I’m sharing it with you. I hope it serves you well in life. It works for me.

(Watch this page for The Adventures of Archy that will be coming soon. If you have a question for Archy, or if you would like to suggest an adventure, you can email it to him at archy@charcot-marie-tooth.org.)

 
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