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Sam’s Story

I can only describe Sam Studley as a truly likeable teenager. Our family likes to tease that he could make friends with a brick wall. As with most teenagers, he loves spending time with his friends and his computer. He is often found creating apps, coding and working on his server with his buddies near and far! He affectionately holds the title as the “IT” director in our home. During warmer weather, he can be found organizing a game with the neighborhood kids or practicing archery. Sam has been homeschooled since first grade and began a new adventure this year attending Lincoln Christian School as a seventh grader. Of course, his favorite part of school has been meeting new friends!

As a child, Sam was a normal rough and tumble little boy who loved to have adventures outside. We really did not notice Sam toe-walking until age 5 when he began kindergarten. We were assured by his pediatrician it was nothing out of the ordinary. As Sam grew and became involved in sports, his difficulties walking and running became more and more evident. He often complained of foot and leg pain after soccer practice and games. At the same time, it became increasingly difficult to fit Samuel in shoes due to changes in his feet. With the help of multiple physicians, exams and a multitude of tests, he was diagnosed with Charcot Marie Tooth at age 11.

Charcot Marie tooth is a genetic condition which affects the myelin sheath of the nerves. This causes abnormal nerve function and the gradual onset of weakness in the hands, feet, arms and legs. Unfortunately, even after genetic testing, we are still unclear of Sam’s prognosis. Sam was prescribed and graduated from physical therapy. He has worn night splints and continues a daily stretching routine to aid in maintaining his strength and range of motion. He is scheduled to have surgery on both feet this spring to help correct some of the effects of this disease. We are thankful that despite his upcoming surgery, Sam continues to have a positive attitude. We have always admired Sam’s resiliency and perseverance.

We find much comfort attending the MDA multi-disciplinary clinic twice a year where he sees his doctors and therapists. We appreciate the support and advocacy we have experienced through our relationship with the MDA. Sam had a blast being spoiled at the MDA summer camp last year and looks forward to continuing this new tradition. The relationships and experiences he had at summer camp were priceless in shaping Sam’s outlook on dealing with the challenges that come with CMT. Sam and his family are excited to attend the MDA Gala and participate in the MDA Muscle Walk together for the first time this spring!

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