This experience, joining the Running for Rare Disease team, has been about building relationships for me; I am making connections and friendships, and learning from others. I have become closer with some of my co-workers by joining this team and realizing that we feel the same way about a fantastic organization we truly believe in. I have met people who work at other sites that share that belief, people who I would most likely not have met without this team. Most importantly, I have made this amazing friendship with Laurie and Shauna Sperou that I will treasure forever. Before this organization came into my life, this awesome family lived a few miles from my house, we might have seen each other at a playground, or the grocery store, or the frozen yogurt bar, and I never would have known them. Now, I can call them friends.
This past Saturday I met Shauna and Laurie at the water stop in Framingham to support the training charity run for the Boston Marathon team. Shauna gave me a gift. It was a perfect, palm sized water bottle she decorated for me during her infusion the day before. I was so excited to have this beautiful hand decorated bottle. I had heard Laurie mention before that infusions are exhausting, so I really appreciated that Shauna made this gift for me during that time. Yesterday, I was using my new water bottle and wearing my Rothmund-Thompson Syndrome T-shirt and I wanted to show Shauna and Laurie how proud I was to show off my gifts at work. I sent Laurie a picture. She responded that she would show Shauna after school, and let me know she has posted her blog about this years Running for Rare experience. I couldn’t wait to get back to my desk and read it.
As I sat at my desk, tired from an intense lunch-break work out, I started reading Laurie’s blog. It made me happy to see she mentioned our weekly runs being something Shauna looked forward to, and all the things Shauna likes to do when she is feeling well. Then I got to the part where Laurie wrote about all the things we forget Shauna goes through, because we see her as a kid and not a kid who has Rothmund-Thomspon Syndrome. Reading about how my friend Shauna was so tired on Saturday because of her infusion, she dozed in the car between water stops- I started to cry. Reading about how she rallies because our team means so much to her is simply amazing. I already knew this little girl and her family was amazing, but every time I am reminded of the things they overcome each day, I am more and more in awe. I am just so lucky to be a part of their lives now.
Laurie often mentions how lucky her family feels to be a part of this team that was formed by people who don’t even know them. Families like them are exactly the reason I do it. I don’t need to know our rare community personally to know how strong they are, how special they are, and how much I can learn from them. I am one of the lucky ones because the Sperou’s have let me in, they share with me, and my life is touched in a way that inspires me to want to give more of myself and do more. We are the lucky ones to have the opportunity to meet, and connect with our rare community. I am lucky. And all I can say to Shauna, Laurie, Phil and all the others who have paved the way to make this team possible is, thank you for making me one of the lucky ones.