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
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
"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.