My passion for running began in junior high, at a time which feels like a lifetime ago. Since then so much has changed. Most significant was the birth of my first son, Louis. We call him “LB”. He was perfect. About seven months after his birth, my previous definition of perfect was altered when he received his diagnosis of Hurler Syndrome (MPS I). The best treatment required a bone marrow transplant. The best location to undergo a bone marrow transplant for patients with Hurler Syndrome was at the University of Minnesota Children’s Hospital, halfway across the country from my small townhome in Saratoga Springs, New York. Although I was determined to do anything to get him the best care, I would be lying if I said it didn’t worry about where we’d live or how we would financially survive in a new place so far from our home. That is when someone mentioned the Ronald McDonald Charities House.
Fast forward a month or so, I was in Minnesota with my perfect baby while he underwent a pre-BMT workup. The Ronald McDonald House welcomed us with open arms. All of those previous fears about where to live, how to survive financially, and other fears about normal day to day tasks were gone. We had a warm bed, without worrying about how to pay for it. We had food; without having to slave in a kitchen. In fact, every dinner was prepared for us by volunteers, all we had to do was show up. On his birthday, we had a room filled with presents and cake. Most importantly, we had love; love from the volunteer staff, love from other families, love from family who came to visit with the same benefits we got from the home, and time to focus on love for my perfect baby.
The Ronald McDonald House was more than a roof over our heads, it was a community when we needed it most. My son was not a boy with a bald head, a face mask, and tubes hanging from his chest. He was LB, and he was not defined by his disease. The best part is ... this love is extended to hundreds of families across the nation when they need it most. The children at the RMH are not looked at for their disease, but they are looked at as normal children. It’s a place where my son and I were able to feel normal under the most abnormal circumstances. It’s a place where we developed never ending friendships. It’s a place where I didn’t feel alone. It’s a place where I never went without a shoulder to cry on or a hand to hold. It’s a place where I was able to focus on the love I had for my son without a bother from everyday stressors.
Our story doesn’t end like a fairy tale. On May 2, 2009, LB died in his hospital room in Minnesota. But when I think back on the short time I had with him, I am filled with love. The Ronald McDonald House gave me the opportunity to spend each of the few days LB had on this earth by his side. For that and so much more, I am forever indebted to the RMH.
Now, six years later, I am given the opportunity to give back to the organization that has helped me more than they could ever know; and I get to do it while accomplishing a lifelong goal of running the New York City marathon this November. Words cannot express how very proud I am to be a part of this team. I am running for him. I am running for the House. I am running for each of the children we met while we stayed at the RMH. I am running for love.
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