On friday I had the great fortune to meet my patient partner Sam, and his parents, Allyson and Nick Buck, in their home in Greenwhich, CT. Allyson has already posted a great summary of Sam’s story. Sam is an amazing little boy, full of life and love. He had a perpetual smile on his face while he played and talked with us during my visit. Even when he sat in my lap briefly for a few photos.
I did not know really what to expect or how our visit was going to go. Allyson had told me before my arrival that Sam could not walk without the assistance of a wheel chair and most of his impairment was seen in his motor function, however his cognitive function is all in tact and he would understand our discussion and would be happy to talk to me. When I arrived I was surprised to see Sam crawling up the stairs to come meet me. He asked his mom to bring him a snack and specific toys he wanted, and Sam and sat with us for a few hours playing, laughing and talking with us throughout my visit. His infectious smile never left his face. It was a truly priceless experience.
Sam has been fortunate to travel to many parts of the world with his family and one thing that struck me was how many things he has been able to do, regardless of his physical limitations caused by the Vanishing White Matter disease. Sam was recently accepted by the children’s Make-A-Wish Foundation and his dream is to ride in a real race car with a professional driver. Sam and his family lived in England for a few years (where his dad is originally from), and he became a Liverpool football fan. He met the team and was able to attend a practice and see them play when they came to the US last summer.
This weekend Sam is going skiing in Vermont with his family. With some professional instructors, aided by a seated ski-chair, Sam is going to take on Pico Mountain. His disease comes with certain risks of progression with any head injury, so one could argue this could be risky. Sam’s parents however made the great, courageous decision to give him every opportunity they could while Sam is able to enjoy his life to the fullest.
Today I ran my longest training run so far in preparation for Boston. Throughout all 16 miles I had Sam in my thoughts, wondering how he is getting on skiing today. I imagine that huge wonderful smile and hope he is having the time of his life. Having Sam with me today made this run a lot easier and much more fun than the expected slog through the snow covered trails I was anticipating. I feel very lucky to run for Sam and proud to be part of the Running for Rare Disease team.