Coping With Charcot-Marie-Tooth Disease

My son is now 9. We noticed when he was little that he had a different walk and was not coordinated. Since we started this process to find out what was wrong we have had probably 5 different diagnosis with all the doctors saying I can’t help anymore. You will just have to be satisifed that we will probably never find out what is wrong. As a mom this was not good enough. I wanted to know what I could do to help.

Finally we found an awesome doctor that took the time to do testing and didn’t give up when one test came back negitive. She ordered the CMT workup, there is no family history. It came back positive just last week. Our goal now is to help him keep what muscle strength he still has and let him be a kid for as long as he can. I feel so blessed to have a doctor for my son’s care that didn’t give up and take the easy way out. It has made the difference of me know being able to help from me not being able to do anything. Even though CMT is scary and not knowing what will happen in the future with him I feel almost relieved that after many years we found out. We are now in the process of getting him evaluated by a specialist, so hopefully I can get more answers.