I am a mom of a child with cmt….

I have never heard of charcot marie tooth until my son was diagnosed with it approximately  ten years ago. I always knew something was “wrong”. He was clumsy and fell often but i thought he was just growing into himself. One day in second grade, his teacher called me. She was screaming at me and asking me what is “wrong with your son?” “Doesn’t he realize he walks into everybody?” “I can’t have this in my class”. She basically went on a screaming tirade about my son. I hung up both so angry at her words and they way she spoke about my son that I wanted to just march up to the school and get her fired and then kick her ass. But I didn’t. I took a few deep breaths and remained calm. After a ton of research I had him tested at a local hospital. They did a myriad of tests and came back to me with a very puzzled look. They said cognitively there is absolutely nothing wrong with this child. In fact he was above other children his age in many subjects. O.K.? Now what? Me and my husband took him to a neurologist and there began our journey!

The neurologist asked my son to walk for her. He did and she looked at me and said “He has Charcot Marie Tooth” I asked her what shark tooth disease was. No joke! Never heard of it. No one in either my husbands family or mine had any neuromuscular disease. What do we do? Is it curable? Is he going to die because of this? All these crazy thoughts and questions were going through my mind. What is our next step? Do not go on the internet the doctor said. It will scare you and upset you. So, of course, as soon as I got home, I went on the internet. Never tell  person not to go the internet because that is the first thing they are going to do! What I saw scared me and encouraged me at the same time. I couldn’t fathom my beautiful, happy, sport playing son never doing any of those things again. What a heartbreak. I had a pity party for my son for exactly one day. That was all. One day. After that my husband an I did massive research. Went to all different hospitals and doctors. My son had all different tests. Finally we ended up with the organization and neurologist that would lead my husband and I into the cmt world. Dr. Shy is his name. The most brilliant, compassionate doctor I have ever met. He is part of the cmta. He put all our fears to rest and so began a relationship of trust and true understand for what cmt really is.

Do not be afraid of having cmt. It takes a while to get used to. You will have to do things a little differently than everyone else but it does not have to stop you from living your life. My son is an active 17 year old boy. He might not play sports as well as the other boys, or walk as fast as the other kids but he is one amazing soul. He never lets cmt stop him from doing anything. He drives. He plays sports. He lives his life. He does it with some modifications but he lives his life.

 

9 thoughts on “I am a mom of a child with cmt….

  1. Encouraging, I currently have a young relative who living with a disorder that doctors have no diagnosis for, they simply tell his parents that he’s faking his illness. But just yesterday he had eight (8) seizures back to back while at school and had to be rushed to the hospital once again. So far this year he’s been in the hospital a total 10 times and has had a shunt in his head replaced six times. I could go on about what he has endured thus far but our family is trusting and believing In God that he and his parents will meet the right doctor that will be able to some answers. Sorry for the long but this article give me some hope!

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  2. My 15 year old has cmt also and like you mu husband and I never heard of it.
    He is very upbeat, not into sports but drama and with his wheelchair been on the local stage a few times with his drama group.
    It’s good to read articles/blogs about cmt as it’s not a well known condition

    Liked by 1 person

    • Thank you so much for your comment. It means alot. My goal is to raise awareness about cmt and hopefully one day we can find a cure for it. Im so happy for your son. I know how hard it can be to be a teenager and be a little “different”. You sound like awesome parents!!! Keep doing what you are doing!!! Thanks so much ruth

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