Michael Capolongo is a typically vivacious six year old determined to explore his surroundings and make his presence known. He dotes on his little sister, Victoria Rose, and idolizes his older brother, Bobby. Michael wants to be just like him. But even as he learns new ways to imitate his big brother, the increasing evidence of his young body’s betrayal is impossible to ignore. The effects of Duchenne Muscular Dystrophy are apparent and even the medications, an intensive regiment of steroids and muscle enhancers are taking a toll on his vulnerable body.
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 die. To date there is no cure for Duchenne.
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.
Michael was diagnosed in November 2010 and with each subsequent day and month after the first doctor visit, the family has come to understand that his ordeal, struggles, and journey have only just begun. Even Michael has learned that if he doesn’t do his nightly stretching, his legs will become very tight. He was once able to run up the stairs to his room at will but now the doctors advise that he should avoid stairs because it damages his fragile muscle cells. Now he is carried. At five, he is just beginning to understand his world and struggles to process the daily changes to life as he knew it.
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. Finances are just another overwhelmingly stressful concern to a family struggling to maintain a sense of normalcy in the life of a sick child. Even life at home carries a tremendous monetary requirement in relation to physical therapeutic medical equipment, medications, and future home alterations that will be required to accommodate an anticipated loss of mobility as Michael’s stamina and muscular health deteriorate.
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.
In 2013, Michael graduated 1st grade which was a great achievement. He goes through a daily course of medication, stretching and physical therapy yet doesn't complain. He has grown very close with his brother Bobby and sister Victoria. In July Michael was granted a special trip from the "Make a Wish Foundation". He selected to go on a Disney cruise. The Disney Fantasy left out of Cape Canaveral Florida and our family spent a week on board one of the best ships in the world. At 7 years old Michael is very strong and enjoyed all the ship had to offer.
In late July 2013, Michael was accepted in his first clinical trial, Halo Therapeutics. This is a very promising anti-fibrotic drug which helps the muscle cells stay healthy. He was one of only 30 boys in the country that were accepted in this trial. Just like anything Michael does he handled it extremely well. Daily blood draws, MRI's cardio exams and physical exams just to name a few of the tests that he underwent. He proved to us just how strong he is. He is our inspiration and strength.