Once again I am running the Boston Marathon for Children's Hospital. This year my patient partner, Will Ward and I are celebrating the 12 year anniversary of our friendship. I have run the Boston Marathon since 2006 in honor of Will and in memory of Steve Burton with Miles for Miracles Children's Hospital Boston Marathon Team. The hospital pairs a child patient with a runner as a part of the program. Steve, my former running coach, and friend was paired with Will in 2004. In 2006, Steve was too ill with cancer to run for Will and I offered to run for Will for Steve. Sadly, Steve passed away a few short weeks after the marathon that year. Over the last twelve years, our partnership has continued on strong! Will and his dedicated parents cheer me on Marathon Monday in Wellesley each year. Seeing Will and family during the race makes all of the tough training worth it! It is my favorite marathon moment each year.
Will is in 10th grade. He spent the first few months of his life in the Children's Hospital Boston NICU overlooking Fenway Park. As fate would have it, he is a Red Sox fan for life! At four weeks old, doctors discovered that he has Myotubular Myopathy (MTM). MTM greatly impacts Will’s muscles and he needs the assistance of a tracheostomy and ventilator to breathe, and a power wheelchair for mobility. Although Will is unable to vocalize, he “speaks” volumes. Will communicates with his sweet smiles, uses assistive technology, and his sense of humor shines through loud and clear. He loves the Red Sox, enjoys music, and plays on a Challenger baseball team. Will also has two very special dogs, who have themselves participated in MTM research as they come from a family of Labrador Retrievers who carries the same MTM gene and is instrumental in current gene therapy research. Will daily demonstrate his love of life, embraces his uniqueness, and inspires those he meets. His presence and purpose in this world is palpable. With the necessary medical supports, Will has thrived and faces each day with incredible resilience and his strong will. It is an honor for me to run for Will and in memory of Steve Burton. All of my fundraising will go to support research for treatments and a cure for congenital myopathies at Beggs Lab at Boston's Children's Hospital. Thank you for your continued support. - XO Kate