Hi, my name is Will! I am sixteen years old and I am in the 10th grade.
I love people, music, and the Red Sox! I was born in 2001 and spent the first few months in the Boston Children's Hospital NICU overlooking Fenway Park. As fate would have it I am a Red Sox fan for life! I have been lucky to receive great care at Boston Children’s Hospital throughout my life, and especially excited that the Beggs Lab at Boston Children’s is one of the leading research labs in the world for Myotubular Myopathy(MTM), the disease I live with. I’m proud to be leading my 9th team for the Beggs Lab and thank you for your support!
I arrived at Children’s Hospital Boston at eleven days old and spent the next few months in the NICU. During that time, the doctors discovered that I have Myotubular Myopathy (MTM). MTM is a disease that greatly impacts my muscle abilities. I use a wheelchair to get around and I have a tracheostomy and use a ventilator to help me breathe. Even with these medical challenges, I still have a very fun and happy life. Children’s Hospital has played a big role in keeping me healthy and thriving at home and in my community.
At the beginning, my family had an opportunity to experience “being at the right place at the right time”. Not only did the doctors and nurses provide excellent patient care for me, but we learned that one of the lead researchers in the world researching MTM was right at Children’s Hospital Boston. Dr. Alan Beggs came to my bedside and shared vital information and resources with my parents on this rare disease. They will always remember not only the information he relayed to them about the disease, but the gracious way he welcomed me into the MTM community and gave us a glimpse of hope through his commitment to this research.
I'm happy to lead my team for the 9th year raising funds for the Beggs Lab Congenital Myopathy Research Fund!
Thanks for your ongoing support!