I have been running almost as long as I have been teaching 7th grade religion class at our parish in Oak Lawn, Illinois. Last year, I became aware of Neurofibromatosis, when I learned that a former student of mine named John is struggling with Neurofibromatosis. I never realized that he had Neurofibromatosis, in fact; I didn’t even know what Neurofibromatosis was.
Neurofibromatosis (NF) is a
progressive genetic disorder of the nervous system. It causes tumors to grow on nerve tissue
anywhere in the body and at any time, which often times result in terrible
disfigurement, deformity, deafness, blindness, brain tumors, cancer and
death. Some tumors may be surgically
removed, but they can grow back.
Neurofibromatosis is the most common neurological genetic disorder
caused by a single gene. Severity of
Neurofibromatosis varies greatly. In
families where more than one person has NF, the physical signs and complications
will vary for each person. Neurofibromatosis can affect people of all races and
genders equally and symptoms vary from person to person. Neurofibromatosis can occur in ANY family.
My thoughts of running a marathon
seemed like a dream not a reality, until 2010.
I always ran alone, thinking about myself and my goals, then I met a
group of runners and began running with them.
On the average, I was 10 years older than most of them but they gave me
the encouragement that I needed to run my first half marathon. When I crossed the half marathon finish line
I knew at that point I could do it. I
could run a marathon, so I signed up for my first marathon, the 2011 Bank of
America Chicago Marathon. Suddenly I saw
the confirmation that my registration was complete and I knew my life wasn’t
going to be the same. I dedicated eighteen weeks to training for the marathon
and my wife was always cheering me on.
She believed in me, supported me and made sure that I always had
everything I needed.
The morning of the 2011 Chicago
Marathon all I could feel was runner’s adrenaline; that feeling of excitement
and anxiousness for the race to start. I
felt good and I started strong. My pace
remained around 9 minute miles, until I hit mile twenty-two and I started
struggling. My pace slowed to about 10
minute miles and I just kept thinking, finish, make it to the finish line and
when I did I remembered the training, the commitment, and the support. I didn’t expect the struggle. I felt for a brief moment last year after
running the Chicago Marathon that this was my last and I wasn’t going to run
another marathon but
somehow
like thousands of other marathon runners that all changed. In retrospect, that last hour of struggling
to finish the Chicago Marathon is pale in comparison to those who are
struggling with Neurofibromatosis on a daily basis. Then I started thinking about the families of
those affected with Neurofibromatosis, and as the father of two healthy children
who are now adults, it makes me realize the incredible strength these families
have.
Every morning, I wake up thinking
how fortunate I am to be able to run.
What would I do if I couldn’t run anymore? I think about those who can’t run. I made the decision to run the Chicago
Marathon again, but this time, I wanted to do if for different reasons I wanted
to do it for those that would never experience the thrill of crossing that
finish line feeling that great sense of achievement. I have found there is much more to running
than just miles. I am just one man who
loves to run and I could make a difference and that difference is to help those
that are less fortunate. When I was looking at the hundreds of charities to choose from, I received an email from NF Midwest. The subject was “A Unique Opportunity.” And there it was, it said “RUN FOR A CAUSE and choose NF Midwest as your charity of choice.” Neurofibromatosis does not have a big name spokesperson or a big budget. I could raise money for NF, and I could raise awareness. My biggest goal is to raise awareness for Neurofibromatosis which in turn, would open new doors and make it easier for those that come after me to raise money for NF. It seems that people are more willing to donate or even listen to your story when it is for something they have heard of. In fact, there are about 2 ½ million survivors of breast cancer and over 2 million people who have NF, it’s that common. My goal is to raise awareness of Neurofibromatosis to those around me is my opportunity to make a difference in the lives of those that struggle with Neurofibromatosis. So step by step, mile by mile I am running to raise awareness of Neurofibromatosis.
A year ago I never even heard of Neurofibromatosis, since that time I have learned a great deal about NF as well as about John’s struggles with this genetic disorder. Since deciding to help raise awareness for NF I learned of two more people I know that struggle with NF and then I met another person at a Health expo. So when you hear about Neurofibromatosis chances are someone you know has NF and if you are like me, you didn’t even know it.
