Just one in every 2,500 people are affected by Charcot-Marie Tooth disease, but for Flower Mound resident Michelle Hayes, the rare condition has hit close to home for her twice.
Hayes’ sons, Carter, 15, and Zachary, 10, were both recently diagnosed with the condition that affects the peripheral nervous system, causing neuropathy, and she said things have been pretty hectic since they found out earlier this summer.
“It is hereditary, but a lot of people are misdiagnosed, so they don’t know if they have it yet,” Hayes said. “My son, Carter, went misdiagnosed for a year and a half.”
Carter, who runs cross country and is in the JROTC at Marcus High School, was diagnosed with the condition when he returned from an ROTC leadership camp earlier this summer, and had a lot of pain in his knees and feet.
“His toes had gone numb,” Hayes said. “Nobody really knew what was going on. We went to his physician when he returned, and she mentioned how his toes were curled. I said his toes had been curled for while. She suggested we take him to an Orthopedic doctor to try to find out what was going on. The Orthopedic doctor did a bunch of neurological testing on Carter…he said at that time he was 98 percent sure he has Charcot-Marie Tooth disease.”
For as rare as CMT disease is, it is actually one of the most common inherited nerve-related disorders. Nerves that stimulate movement are those most affected, and CMT causes muscle weakness and atrophy.
“The saying in the CMT world is that it is a funny name, serious disease, because it can actually cause deformities, and sufferers can lose feeling in their feet,” Hays said.
“Your muscles start to waste away. It can affect your swallowing, your breathing, and you get neuropathy pain, which is horrible pain.
“Carter has to check his feet every night, because he and a lot of people with this condition can’t feel pain or discomfort.”
Hayes said one of the most difficult things for her to see is how her son’s daily routine has been impacted.
“It is affecting Carter more right now,” Hayes said. “He can’t stand for long periods of time. We had to change his schedule for high school immediately. He had to quit the cross country team. He was fortunate in that all of his classes are close together, because he can’t walk long distances.
“It’s really devastated our whole family, because Carter was the first to be diagnosed. To be honest with you, the saddest part for me is that he knew what he wanted in life. From the time he was six, he knew he wanted to go the Naval Academy, join the military and become a Navy Seal.”
Hayes voice seemed to break, and she paused for a moment.
“How do you tell a 15 year old, who is on his high school’s cross country team, that he might not be able to compete any more?” Hayes said. “And how do I tell him that his dreams of becoming a Navy seal since he was six, are probably not realistic any more?”
In spite of learning at the age of 15 that he suffers from the progressive disease, Carter Hayes has not reacted the way one might expect.
“He’s started Carter’s Challenge, which is where he is going to cycle,” Hayes said. “He said that if he can’t run, he’s going to cycle, and he’s going to cycle for awareness. He is doing the Cotton Patch challenge in September. He has been a great mentor for his younger brother, Zach, as well, and just handled it very well.”
There is no cure for CMT, but it can usually be managed or at least have the effects slowed down through low impact exercises, such as swimming, cycling and so forth, which do not put a lot of pressure on the feet.
Carter, who’s motto is “Stay Strong and Believe,” because he does believe there will be a cure for CMT one day, said he does face some challenges in his everyday life that have taken some getting use to.
“The most difficult thing is seeing my old friends on the cross country team run,” Carter said. “When I see them, I feel kind of emotional about it, because I can’t really run any more. That’s probably the hardest part of this disease is not being able to do the things my friends could do.
“Running, sometimes walking, standing for long periods of time and writing present the biggest challenges.”
Regardless of the obstacles he faces, Carter said he has still been able to see some positive things that have resulted from the conditions.
“I am meeting new people, and I see the world in a new light,” Carter said. “You can’t do some of the same things that other people can do, but you can serve as an inspiration for other people and show other people that you are not so different from everyone else. We are all trying to lead a normal, happy, everyday life.
Hayes said she is selling Carter’s Challenge bracelets for $3 each to help defray medical expenses and therapy, as well a trip to Detroit to the only CMT Clinic in the country this December.