As he fights his own neuromuscular disorder, a WilmU student helps others to do the same.
Rob DeMasi even remembers the name of the play: “Boston.”
“It was a blast up the middle,” he says. “Fullback leading me to the hole between the center and left guard.” The play occurred early in the second game of his senior season at Wilmington’s St. Mark’s High School — a home game against Fallston (Md.). It would signal the end of a stellar high school athletic career for Robert Paul DeMasi, Jr.
When the center snapped the ball, the 5-foot-9-inch, 180-pound DeMasi exploded from his tailback position, took the handoff from his quarterback … and fell down at the line of scrimmage.
“It was almost as if I had tripped over my own feet,” he remembers. But he hadn’t, and no one had touched him.
DeMasi got up, went to the huddle, and heard “Boston” called again. And again, “D-Mase,” as he was known to his teammates, took the handoff. And again, he fell just as he reached the line.
The St. Mark’s coach, John Wilson, pulled him from the game. DeMasi rested at halftime and did have one more carry, for 25 yards, in the second half, but his debilitating symptoms were apparent and the coaching staff shut him down for the rest of the season.
His condition soon worsened and he was admitted to Christiana Hospital. Within a few weeks, he lost nearly 40 pounds. He says he couldn’t walk or talk, and breathing was a constant battle. “I had to force myself to suck in a breath and then breathe out,” he says. “Basically, I was paralyzed from head to toe.” The neurologists’ diagnosis: anxiety.
That September day eight years ago marked the most devastating in a series of scary, puzzling attacks that began in DeMasi’s freshman year — attacks on his body, his equilibrium and his eyesight that would have forced an ordinary person to the sidelines of life, never mind a football field. Yet DeMasi not only fought but prevailed against the mysterious disease, meanwhile gaining national prominence as a wrestler and becoming a three-year starter on the Spartan football team.
Today, the 24-year-old DeMasi is a student at Wilmington University, he holds down a full-time job, and he is head of a foundation he founded that champions others who have similar ailments.
He vividly remembers the initial signs of his disease, which took years to diagnose. “It was my first year at St. Mark’s,” he says. “I began experiencing double, blurry vision and general body fatigue.”
In his sophomore year the symptoms intensified. He endured periods of extreme difficulty in breathing, and he had trouble walking up stairs and swallowing food. But when he went to the school nurse, to his doctor, and to the hospital, the diagnosis was always the same: anxiety, depression and panic. And so the doctors prescribed medication to treat those conditions.
“They wrote off all my symptoms as psychosomatic,” says DeMasi. No one could believe that this strapping young athlete could be suffering from a physical illness.
He soldiered on, and as he entered his senior season he was beginning to feel almost normal. His dream was to play college football; he had received interest from several schools, and he had spent the summer working out twice a day at the school in hopes of getting scholarship offers.
Then came the game against Fallston — a game St. Mark’s won handily — and it all came crashing down. “We expected big things of him,” says Wilson, still the Spartans’ head coach. “It was sad to see a great player go downhill like that.”
At Christiana Hospital DeMasi underwent several tests over about 10 days. While there he was visited by Dr. Eva Geracimos, his family physician, who came during her off hours. She consulted with his doctors, and as a result three final tests were administered to DeMasi, after which he was discharged without a definitive diagnosis of his condition.
The following week he followed up with Geracimos in her office and she informed him that one of the tests had returned positive for myasthenia gravis (MG), a neuromuscular disease that leads to fluctuating muscle weakness and fatigue. Based on the test, she prescribed a low dosage of Mestinon, an oral drug used to improve muscle strength. It stabilized his condition, but she also referred him to a specialist, Dr. John Crawford at Johns Hopkins Hospital in Baltimore, for further treatment.
“Dr. Crawford got me on the right track,” says DeMasi. Crawford prescribed prednisone and Mestinon, and also recommended a thymectomy — the removal of the thymus gland, which is a treatment for MG.
DeMasi and his parents agreed to the surgery, and to prepare, he returned to the gym with his usual determination, working out two hours every day, lifting and running, for two months. His strength regained, he underwent the thymectomy.
Following the operation, he went into remission for a year. During that time he enrolled at the University of Delaware for a short period, then transferred to Delaware Valley University in Doylestown, Pa. He was there for a semester-and-a-half and began playing football.
Then came another major relapse. DeMasi consulted with Geracimos, and this time she recommended Dr. Olga Katz at Thomas Jefferson University Hospital in Philadelphia — a much shorter trip than the one to see Crawford at Hopkins in Baltimore. Katz put him on a low dosage of prednisone, with Mestinon as needed. DeMasi continues to see her today, and both patient and physician are hoping he can someday be drug-free.
By 2012, DeMasi had been waging a continual battle against the disease for seven years. And although it affected him, his family and his friends, he decided it would not define him. He also decided that he would try to help others who suffer from neuromuscular disease. He took this seed of an idea, sat down at his computer and came up with a name — Muscle Movement Foundation — and a logo: two large letter Ms sprouting two well-muscled arms.
The seed would lie dormant for a year or two while DeMasi went about dealing with the disease and living his life. He re-enrolled in the nursing program at UD, then dropped out to take a job as wrestling coach at H. B. duPont Middle School in Hockessin, Del. That part-time position blossomed into a full-time job as a facilitator at the school. He stayed for three years, during which the wrestling team went 38-0.
While he was at H. B., the seedling that was Muscle Movement Foundation took root and grew. DeMasi did some local fundraising events, talked to various groups, and soon got other organizations, high schools and colleges involved. He formed a small board of directors, including Dr. Katz.
Today, the foundation is flourishing, raising funds to help victims of MG and other muscular ailments with medical care and equipment. Last year, the organization applied for 501(c)(3) status as a tax-exempt non-profit.
“We’ve assisted five individuals locally and one each in Illinois, Texas, New Jersey and California,” says DeMasi. “The help we provide can be physical, financial or emotional.”
The disease differs from patient to patient, he says, but it presents daily challenges. “Brushing your teeth, getting out of bed, everyday things can take tremendous effort. And it also creates a great amount of isolation.”
MMF has a Facebook support group designed for Muscle Champions — those who are, in DeMasi’s words, “living and refusing to lose to neuromuscular disease.”
“It’s for friends and families to connect and provide the love, hope, and support we all deserve,” he says. “You can ask questions, share information, connect with nearby survivors.”
When DeMasi decided to go back to school last year, he chose Wilmington University because it was close to his home in Hockessin and it accommodated his busy schedule. Like many WilmU students, he has a full-time job. He is the director of social media and sales representative for Tyrant Wrestling, a Wilmington organization that sponsors camps and training sessions for wrestlers and also sells sports gear.
“I had heard lots of good things about Wilmington,” he says, “and when I visited I saw it was a beautiful campus. I also liked the small size. It’s very hands-on. Teachers are always available. It’s been one of the best experiences of my life.”
The personable DeMasi has quickly become part of campus life. He arranged for one of his Muscle Champions — 14-year-old Eddie Hazeldine, a Duchenne muscular dystrophy survivor — to be awarded
a Letter of Participation by the Wildcat baseball team. During the 2016 season, Hazeldine attended some games while the team raised awareness of neuromuscular diseases and solicited pledges based on their on-field performance.
DeMasi is majoring in behavioral science. “It has a strong balance of psychology and sociology,” he says, “and it relates most to my calling in life: assisting others in overcoming adversity, obstacles and negative situations.”
Adjunct Professor Dr. Sarah Marvian taught DeMasi in two classes. She says that DeMasi was “quiet, somewhat under the radar,” in her Interpersonal Communication Skills class, but last fall, in Psychology of the Exceptional Child, she says he blossomed.
“He gave a great presentation in the class that drew me into his challenges and made me realize what he was dealing with,” says Marvian. The class dealt with resources in the community that are available to “exceptional” children, and DeMasi talked about his foundation.
“He seems to have a special ability to communicate with children,” says Marvian. “What struck me was that when he talks about his work, he is almost transformed, and I’m sure he is like a super hero to young people. He is determined to use his challenges to give back to others.”
Thanks to an iron will forged on football fields, wrestling mats, and in weight rooms, Rob DeMasi has spent the past eight years overcoming his personal challenges. Soon, armed with a WilmU education, he will be poised to spend a lifetime in the selfless pursuit of helping others to overcome their challenges. WU