In the years leading up to October 2010, my wife Theresa and I were living what felt like a picture-perfect life.
We were busy raising our sons—six-year-old Bobby and four-year-old Michael—and were overjoyed to learn that Theresa was pregnant with our third child.
But on October 30, everything changed.
The importance of family and community support took on a new meaning when our son Michael was diagnosed with Duchenne muscular dystrophy (DMD), a rare and severe neuromuscular disease.
We started to suspect that something might be wrong when Michael began to frequently complain about pain in his legs while running around the playground with his friends.
At first, his pediatrician felt that there was likely nothing to worry about, but she ordered blood tests as a precaution.
The results revealed that Michael’s creatine phosphokinase (CPK) level, which measures muscle damage, was significantly higher than the typical range, indicating that his muscles were undergoing considerable stress or deterioration.
Following further genetic testing and a muscle biopsy, we were able to confirm a DMD diagnosis.
Like many other parents, Theresa and I had never heard of DMD before Michael was diagnosed.
We immediately set out to do our own research and learned that DMD is a rare genetic disorder characterized by progressive muscle damage and weakness. It primarily affects boys and occurs in about 1 in every 3,500-6,000 male births worldwide.
Over time, people living with DMD can become wheelchair-bound and may require special assistance with many daily tasks including brushing their teeth, washing their hair, or opening a door.
While several treatment options for DMD have been approved in the U.S., the disease has no cure.
In the first few years after his diagnosis, Michael’s abilities were similar to those of other children his age. At 10 years old, he was still fairly strong and able to run around a bit.
However, by the time he was in his early teens, we could see that his leg muscles were becoming weaker. Years of steroid therapy also weakened his bones, making them brittle and susceptible to injury.
He began falling more frequently and at 15 years old, he slipped and fractured his hip.
Robert Capolongo pictured with wife Theresa and their three children, Bobby, Michael and Victoria.
Robert Capolongo
Although it seemed like he would never be able to walk again, Michael worked tirelessly in physical therapy, using a zero-gravity treadmill and relying on a walker for support.
With grit and unmatched resilience, he was back on his feet three months after his fall. Unfortunately, he fell again only three and a half months later, this time, breaking his femur.
Despite engaging in aquatic, stretching and massage therapy, he has not been able to bounce back like he once did.
His daily routine now includes a diverse mix of therapeutic approaches including wearing leg splints at night, taking multiple medications, stretching exercises, physical therapy, electrotherapy and aquatic therapy.
DMD has taken so much away from him, yet despite everything he has endured, Michael never complains—not once.
He has a magnetic personality and is passionate about sports, cooking and spending quality time with his family and friends. He recently graduated high school and like many young adults, he is deciding what he plans to do next in life.
Despite the uncertainties that come with being an 18-year-old living with DMD, I am proud that Michael’s commitment and drive to support others has never wavered.
He has been a participant in several clinical trials, and the study he was most recently enrolled in required him to visit the Children’s Hospital of Philadelphia every two weeks for infusion treatments.
He is committed to playing a role in improving the lives of others diagnosed with DMD.
Michael has also worked to make a positive impact for the DMD community through Michael’s Cause, a nonprofit organization dedicated to supporting families affected by DMD and raising money to fund research.
My wife and I founded the organization in 2011. Since then, we have raised more than $3 million to help countless families obtain wheelchair-accessible vans and other supportive and medical equipment, in addition to funding critical research efforts.
We host a number of fundraisers and events throughout the year and Michael attends nearly all of them. Families affected by DMD know that the disease never takes a vacation, so we work every day to help meet their needs.
September is Muscular Dystrophy Awareness Month and on September 22, we hosted the 12th annual Michael’s Cause Step for a Cure 5k Run & Walk in Staten Island, New York.
Every year, this event provides us with an important opportunity to remind members of our community about the challenges people living with DMD and their loved ones face every day.
I hope that by sharing our family’s experience, we can encourage the public to learn about DMD and support efforts to develop additional treatment options for this devastating disease.
Robert Capolongo is a retired New York Police Department (NYPD) Sergeant and father of three from Staten Island, New York who currently works as a corporate security professional. His wife Theresa is a nurse manager at the neonatal and pediatric units of Staten Island University Hospital. Their son, Michael, was diagnosed with Duchenne muscular dystrophy (DMD) at four years old. In the years following, Robert and his family established Michael’s Cause, a nonprofit dedicated to helping families affected by Duchenne muscular dystrophy (DMD) and raising money to fund research efforts.
All views expressed are the author’s own.
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