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CMT - Charcot-Marie-Tooth Channel

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Meet Nick Zappola

He remembers the exact date of his first surgery: March 8th. Diagnosed with Charcot-Marie-Tooth at age thirteen, Nicholas Zappola's operation marked the beginning of his journey down a new path in life, one filled with challenge, intensity and surprisingly, benefits.

Nick is eighteen now, yet he feels he knows his life's purpose, and this revelation is a direct result of his having CMT. Nick is deeply dedicated to making a difference in this world, and for him that means supporting others who live with CMT
"When I was first diagnosed, what I really wanted to do was talk to people who had CMT too." Nick says. He soon knew this was his calling. He set out to create that kind of comfortable place for people facing the challenges of CMT. Now, those of us over the age of thirty may be thinking of some kind of community center with some nice comfy couches, weekly support group meetings, coffee and doughnuts. But Nick's a teenager, and so "a place" means cyberspace. Nick developed a website, www.cmtchat.webs.com, a facebook page (look for Nick Zappola), youtube videosit's all there. And it's working.

Nick tells of people from around the world who have contacted him, seeking solidarity and connection. If you ever have the good fortune to meet Nick, you'll understand how he can pull this off at such a young age. Nick is refreshingly honest, incredibly insightful. The story of his emotional journey after learning of his diagnosis is truly a profile of courage.

After pains in his hips began to slow him down while in middle school, Nick's doctor took some x-rays. "How are you even walking?" Nick remembers the doctor asking him. Nick has severe hip dysplasia as well as CMT, and this resulted in difficulty walking and a lot of pain.

"I was really upset at first," Nick remembers his reaction upon learning that he had CMT. He had no idea that anyone in his family had the disease. He guesses that this is because a "kid sometimes just doesn't notice when an uncle walks a little funny." So the diagnosis came as a shock, and unfortunately, Nick's symptoms are more progressed than any of his family members with the disease.
Nick recalls the next step in his journey. "At some point, I knew I had to take it by the horns, do something with it."

Nick plans to go into the health care field, perhaps as a doctor, physical therapist, or a researcher. He's been through nine surgeries himself which have helped somewhat with movement in his legs and feet, but they have also left him with a lot of pain and medical restrictions, such as being directed by his doctors never to walk barefoot.

"That's not happening," Nick states firmly. He lives in Sag Harbor, NY, near the beach, and the idea of never feeling the sand beneath his feet is a bit too much to bear. Similarly, despite being given an elevator key to avoid taking the stairs to get to class, Nick often chooses to walk with his friends.

"I'm trying to remain as independent as possible," Nick says. Although there are times when intense pain has caused him to collapse in the school hallway, there are always people around willing to help. "One time, my friends actually picked me up and carried me to class." Nick feels strongly that one of the benefits that comes from having CMT, especially as a teen, is that he helps his peers "open their eyes and see what's going on around them, that there are ways we can help each other, ways we can all make a difference."

Nick evinces the optimism and invincibility of any high school senior, but carries with him an impressive sense of purpose, an empathy for the conditions of others that seems advanced for his age. It is clear this young man will accomplish great things and will indeed make a difference.

Even if he goes barefoot once in a while.
 

 

 


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