About Michael

Michael is a fourteen year old freshman 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 and playing with his dog Rosie and cat Stitch. He is very close with his sister Victoria and brother Bobby. He loves being with his family and friends.


Michael was diagnosed with Duchenne in November 2010 and has endured more in the past 8 years than many have in a lifetime. His daily routine includes various medications, stretching, physical therapy, electrotherapy, and hippotherapy. He wears nightly leg splints to keep his legs from tightening. Michael has been a participant in 2 clinical trials thus far. He is now past 2 years in the Roche myostatin inhibitor trial at Johns Hopkins in Baltimore, MD. He has proven to be a true pioneer of science. With this trial are many trips back and forth to Baltimore and a weekly injection that he hopes will preserve his muscle strength. Throughout all of this, he complains about very little. He just wants to be like every other 14-year-old boy.

Michael has been a participant in 2 clinical trials thus far. Unfortunately, the Roche myostatin inhibitor trial came to an end over a year ago. Michael had to endure many trips to Johns Hopkins in Baltimore and weekly injections. Throughout all of this, he complains very little. He just wants to be like every other 14-year-old boy. We are actively searching for new trials that may help Michael. In the meanwhile, 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 10 years. Boys and men are living longer healthier lives.

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 10 years. Boys and men are living longer healthier lives.

Born to parents Robert and Theresa Capolongo, Michael is a part of a family devoted to public service. Rob is a Sergeant of the NYPD, and Theresa is a nurse in the Neonatal Intensive Care Unit at Staten Island 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.

 

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.