Michael is a sixteen year old Junior at Tottenville High School in Staten Island, NY. Michael has a magnetic personality. His spirit and emotions fill every room he is in. He loves all sports, cooking, and spending quality time with his family and friends
Michael was diagnosed with Duchenne in November 2010 and has endured more in the past 13 years than many have in a lifetime. His daily routine includes various medications, stretching, physical therapy, electrotherapy, and acquatherapy. He wears nightly leg splints to keep his legs from tightening. Michael has been a participant in 3 clinical trials thus far. He is now part of his 3rd clinical trial at the Children’s Hospital of Philadephia (Chop) for over 1 year. This trial includes an infusion every 2 weeks. Throughout all of this, he complains about very little. He just wants to be like every other 16-year-old boy.
We are trying to keep him as healthy as we can. We are blessed that he is very strong and eager to stay that way.
Duchenne Muscular Dystrophy is the leading fatal genetic disorder worldwide. It effects 1 in 3500 boys. Duchenne results in severe muscle wasting. By age 12 boys are usually wheelchair bound. Ultimately, Duchenne effects the heart and lungs thus leading to death by the early 20‘s. It is caused by the bodies inability to make a protein called dystrophin. Dystrophin is an essential ingredient in muscle cells that acts as a shock absorber. Without this protein the muscle cells become weak and eventually turn to fibrosis. To date there is no cure for Duchenne. Science and medicine have made significant advances in the past 15 years. Boys and men are living longer healthier lives.
Born to parents Robert and Theresa Capolongo, Michael is part of a family devoted to public service. Rob is a retired Sergeant of the NYPD and now working with American Express. Theresa is a nurse manager of the Neonatal intensive care unit and Pediatric Unit at SI University Hospital. To a family that has spent years actively nurturing and protecting the community, such a diagnosis brought the difficult realization that life, regardless of planning and perseverance, is sometimes out of our control.
A family dealing with Duchenne will literally search the world: out-of-state to pediatric hospitals, meetings with researchers and physicians for alternative treatments, and absences from work to attend conventions and conferences for the latest research findings.
The landscape for this disease is changing. Research and science is advancing. Donations generated by Michael’s Cause will be directed towards research in the hope of making Michael’s years with us and the lives of thousands afflicted with this horrific disease manageable. We strive to generate additional opportunities for researchers in their crusade to minimize the ravages of this disease on the life of little boys and ultimately find a cure.
There is an old Latin expression, which loosely translated states: “Be patient and kind, for someday this pain will be useful to you.” And so it has been as the fight for Michael continues.