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.
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