Survivalist Pro
Survivalist Pro
Photo: Alex Green
He lives with Becker muscular dystrophy (BMD), a rare neuromuscular disorder that progressively weakens his muscles on the cellular level. As Mario ages, his muscle strength will continue to diminish, but this circumstance only fuels his voracious drive to improve the world for people like him.
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Read More »“She was instantly accepting of my disability,” remembers Mario, speaking from the home the two now share in Silver Spring, MD. “It became clear early on what my limitations were. She’s had no problem adapting to my changing needs over the last several years.” Mario and Theresa’s love steadily grew from their first chance meeting and quickly blossomed into a steady relationship, a marriage, and now, a young family with three daughters: Petra, the oldest, and identical twin infants, Ginevra (“Ginny”) and Evelina (“Evie”). Mario’s family and career arose from what once was a cloud of doubt due to a diagnosis that could have defined his existence. He lives with Becker muscular dystrophy (BMD), a rare neuromuscular disorder that progressively weakens his muscles on the cellular level. As Mario ages, his muscle strength will continue to diminish, but this circumstance only fuels his voracious drive to improve the world for people like him. For the past 15 years, Mario has worked for the federal government in the disability rights arena and has influenced national policy, supporting people with disabilities in their long quest for better accessibility in the United States. “Disability does not slow this man down,” says Theresa, laughing. “He does what he wants to do. If it’s not obvious how to do something, he finds a way. He’s really positive about life.” Mario’s upbringing in many ways defined the limitlessness of possibilities. His father, Bruno, emigrated from Italy after World War II, and married Judy, an Italian-American from Ohio. His parents were socialites, who loved to host large gatherings at their house with diverse company. Bruno worked as a college professor who lectured internationally while Judy ran a travel agency. This meant that from a young age Mario began traveling the world, visiting nearly 40 countries. However, not all destinations were far away. For holidays, Mario would sometimes visit his mother’s family in Ohio. There he would get to see his cousin, Chuck, who was born with Duchenne muscular dystrophy (DMD). Chuck was older but early on exhibited some of the fears as well as the resolve that would come to define Mario. “Chuck had a positive attitude and good sense of humor,” he remembers. “He didn’t complain about his condition. Instead, he tried to live his life to the fullest. He was certainly an example for me.” At three years old, Mario started exhibiting symptoms that would clue his parents that he might be affected by a similar disorder. Though he walked fine, he grew enlarged calf muscles and stood up from the ground in a peculiar fashion, using his hands on his legs to upright himself. This technique, known as Gowers’ sign, caught his parents’ attention, and they brought him to a neurologist to be evaluated. Suspecting Mario might have some form of muscular dystrophy, the neurologist recommended a muscle biopsy. Mario was initially misdiagnosed with Duchenne. The news was delivered with little sympathy—doctors offered little information or hope. “The doctor just said, ‘Your son has Duchenne. He’s probably not going to live past his teens,’” Mario retells. Once the initial shock wore off, Bruno and Judy took it upon themselves to come to terms with and educate themselves about the condition. Judy promptly connected with the local chapter of the Muscular Dystrophy Association (MDA), where she soon began to advocate, volunteer at the MDA clinic at Children’s National Medical Center, organize local fundraising events, and create various opportunities for Mario. He was featured three times on a local broadcast of the MDA telethon, helping to fundraise for a cure to his disease, and developed close relationships with members of the Montgomery County Fire Department for the annual Fill the Boot campaign to support the MDA.
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Read More »Paramount to his condition, Mario was included in all activities possible—at home, on the road, or in school. “I wasn’t treated differently by those closest to me, especially my parents and family members,” recalls Mario. “That’s the philosophy I’ve taken: Do the best with what you have. That’s something that people with disabilities realize more than the general population.” One thing that his parents did not want to chance was birthing another child with the incurable disease. They decided to adopt a girl from Costa Rica, two years younger than Mario. “I was overjoyed,” he remembers. Maria Gabriela (“Gabi” to Mario) has been one of his fiercest allies over the years and was able to help him considerably as his mobility declined in his teenage years. “I used to have a bedroom on the second floor,” recalls Mario. “If I was too tired to climb the stairs, she would give me a piggy-back ride up.” As Mario grew, it became obvious that his trajectory would be different from his cousin’s. Chuck lost the ability to walk before his teen years and suffered a steady decline in physical abilities, requiring around-the-clock care. “My progression looked nothing like his,” says Mario. “I was walking until I was 23.” With advancements in genetic testing, doctors were able to determine what already seemed clear to some—that Mario had Becker and not Duchenne. Meanwhile, Chuck’s health declined steadily into his early 20s until living itself became a struggle. “He had two final wishes,” remembers Mario. “Finishing college and talking to Jerry Lewis to thank him for supporting the MDA.” With hard work and determination Chuck was able to achieve both before he passed away from Duchenne at age 23. “His loss was felt heavily throughout my family,” reflects Mario, who’s had to come to terms with the questions of mortality interwoven into any MD diagnosis. In a similar spirit to his cousin, Mario pursued lofty goals, and was fortunate to have the time to achieve them. He went to The Catholic University of America in DC to pursue his undergraduate studies. It was on campus that the lightbulb first went off: Even with the well-intentioned guidance of the school administration, there was not enough attention given to the needs of the disabled student population. And Mario needed more accommodations now that he was in college. As his condition progressed, he began to have increased difficulty walking, even short distances.
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Read More »On a snowy morning, Mario pulled into the parking lot, attempting to get to class on time. However, all the accessible parking spaces were buried under a huge snowbank. “They put the snow there because they thought the space was underutilized,” says Mario. “That struck a nerve with me. I wrote a letter to the head of facilities to correct the problem.” After ameliorating that issue, Mario began to recognize and tackle more problems of accessibility at the school. “I started meeting others with disabilities on campus,” he recalls. “They had the same needs as I did, so we started teaming up to do advocacy together.” In 1998, before even finishing his undergraduate degree, Mario started law school as part of a B.A./J.D. joint degree program that Catholic offered. “I first thought I was going to be a prosecutor,” he recalls. As his disease progressed, he was forced to reevaluate his plans. “For me, that lifestyle—working long hours at a firm or in court, and the physical toll it can take on you—was one that I didn’t think I could sustain, and led me to choose a different path. Thinking back, and seeing the success that people with disabilities are achieving in a variety of fields, I probably could have done it, but I have no regrets about the career path I've chosen.” A different challenge was calling, and Mario became ensconced in the world of legal advocacy for people with disabilities. “I’ve learned a lot about the disability rights movement and what those before me did for the disability community,” he says with sincere appreciation. “Without them, there would be no Rehabilitation Act of 1973 or ADA [Americans with Disabilities Act], among other achievements. Their legacy is something we can never forget and must always try to honor.”
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