A few months ago, my good friend Tyler and I decided to run
the Flower City Half Marathon, and support each other in our training efforts
along the way. Since I'm running 13.1
miles, and I've never run more than about 7 miles at a time, I immediately knew
I wanted to use it for something bigger than myself- as a fundraiser for
something. And then I immediately knew
what I wanted to fundraise for.
Over a year and a half ago, I began working with two young
women with Friedreich's Ataxia, as a part time job to supplement my AmeriCorps
living stipend (and because I love working with people with physical
disabilities). FA is similar to Muscular
Dystrophy, in that it affects your fine motor skills, and eventually the function
of your major organs. This part time job
became so much more, and to say that I have enjoyed working with Sara and Laura
would be an understatement. I feel
connected to the Ferrarone family in ways I never thought possible. Sara and Laura rapidly became my friends, and
working with them brought me fulfillment in days that were long and chaotic at
my other jobs. I felt such pride when I
could make life easier for them, or make them laugh, which wasn't difficult,
but still.
That's not to say it hasn't been hard. Watching these two lovely young ladies
rapidly lose their physical abilities at 22 and 26 has been one of the most
painful things I've ever experienced. To
sit with someone night after night and watch them struggle to feel the straw in
their mouth to drink, or to watch them not be able to control the muscles in
their neck to talk to you is extremely difficult and frustrating. When I started working with them, both Sara
and Laura had abilities that they lost within a few months of that time. Sara was farther along in the disease, and
declined rapidly. Despite these
difficulties, both young ladies exhibited courage and strength that I will
never know. Their parents, Bob and
Margaret, have not lost their strength or perseverance, and have done
everything in their power to give them the best lives possible. This attitude on life is admirable and
infectious.
This past Thanksgiving, I left with my family to visit my
grandfather in South Carolina. As we
were leaving to return home, I got one of the worst phone calls I've ever had. It was Margaret, calling to tell me that
there had been sudden complications in the health of Sara, who had been feeling
very ill for quite some time. Sara made
the courageous decision to forego the risky surgery, and instead pass away
peacefully. I tried, and failed, to keep
composure on the phone, and then cried for the next 14 hours in the car. I felt like my pain couldn't be contained in
the tiny car, and would explode over the highway in a wave of grief.
The following week, I worked with Laura every night, taking
her to the wake, and comforting her and the family, as they simultaneously were
providing comfort to me. I could go on
and on about how painful this time was for me, but still the pain of their family
was something I can't imagine, or ever want to.
They have known a sorrow that no one should ever have to experience in
their life.
The situation is difficult, and often hard to process. But the legacy of hope and faith is still
strong within this family.
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I would like nothing more than for the younger daughter to
have a cure and be able to find peace.
That being said, I was drawn to FARA, a nonprofit organization that is
researching a cure for FA. This will be
my first event as a part of Team FARA, and I am raising money for them as I
train. My goal is to have at least $750
by the time of the race on April 28th, and my aim is to not have to
stop or walk during the half marathon.
I’m not looking to set any land speed records, but I will be pushing
myself to try to finish in about two hours.
My friend Tyler and I have many, many different motives for running
(some more noble or hilarious than others), but during the difficult times in
my training and in the race, I will be thinking of the girls, and how much they
would give to be able to run any of the 13 miles in the race.
Peace, love, and thanks, Elizabeth
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