I love someone with CMT to the moon and back!!!

I was raised by a proud, strong, hard working Father, who also happened to have CMT. He was so resilient and brave I never realized he was “disabled”, he never let CMT stop him. When my son was diagnosed in 2014 at the age of six I was told he had peripheral neuropathy from his elbows to his fingertips and from his knees to his toes, that he needed to be casted for Afo’s and begin physical therapy. I was overwhelmed, shocked, sad and determined to learn all I could about CMT so I could help him. On the ride home all he could talk about was how he wanted to help others with CMT. I got online to research, my search led me to the CMTA. They were looking for volunteers to host walks to raise money to find a cure. I asked my son if he would like to host a walk In our area. He said absolutely! He was excited to be a part of finding a cure, to provide support and by the possibility of meeting other children with CMT. We signed up and have hosted 3 walks. Each walk has been such a blessing to our family and an honor to host, as we are not only walking for my son but for my father, nephew, sisters, grand mother, aunt, uncle and many more family members, as well as friends and strangers. I have also been blessed to have attended a CMTA conference. I learned so much and I was embraced by the most upbeat, determined, wonderful people I have ever met. Unfortunately there aren’t many people in our area, let alone children with CMT, My son was still left with a longing to meet other children. Last month his dream came true when he attended Camp Footprint. He spent 5 days learning and having fun with kids just like him. I don’t know where our CMT journey will lead us from here, but I do know that we will continue to do all we can to raise awareness, delay progression, find a cure, and live our best lives.

One thought on “I love someone with CMT to the moon and back!!!”

  1. We praise the Lord for all of us with CMT, we love each of our family members that struggle with this hard painful 😣 disease. Thank You for doing the walks, it gives our family a chance to give back

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