Illuminating Unseen Dimensions
Big Picture Focus
Anthony Maisonave lives with limb-girdle muscular dystrophy — and dreams of a degree that will propel his passions forward.
A big city bus roars around the corner, past rows of golden brick buildings on a hot afternoon in the Bronx. Keenly aware of his environment, 11-year-old Anthony Maisonave glances up from the bus stop. His mother, Maria, squints and asks in a thick New York accent, “Is that our bus?”
“Nope,” he says in a soft, high-toned voice as he fixates his attention back on his newest fascination, a high-tech camera. Anthony gazes intently at the various settings. He adjusts the giant lens and pushes the button to snap a photo. Click.
“Whoa!” he shouts in excitement, flashing an enthusiastic smile before snapping another picture.
Anthony and Maria are making a routine trip to the hospital to help reestablish care with Anthony’s doctors in New York City — a time-consuming process. They make several trips a week for Anthony to get checkups and physical therapy, and each appointment takes the better part of a day after the hours spent riding public transportation, sitting in waiting rooms, and finally receiving care. Anthony lives with limb-girdle muscular dystrophy type 2C (LGMD2C), a genetically inherited condition that causes weakness and atrophy of the proximal muscles in the hips and shoulders. With barely enough strength and energy to walk, Anthony uses a wheelchair to travel outside his apartment.
When the correct bus approaches around the corner, Anthony wheels himself into position. The bus pulls up and a ramp opens onto the sidewalk. The sea of passengers parts for Anthony to board.
“Thank you!” Maria models to Anthony an expression of appreciation for the kindness of the people around.
“Thank you,” Anthony quietly repeats. Operating a joystick, he spins around, maneuvers up the ramp, and onto the bus.
Through adversity to possibility
Anthony originally hails from the Bronx but has moved around consistently throughout his life, leaving New York City for some time because of unstable housing situations. However, Anthony’s family recently moved back to the neighborhood where they lived when he was first diagnosed.
The family’s precarious economic condition is complicated. Anthony’s father, Carlos, who once helped support the family by working as a truck driver, suffered two heart attacks in the last year and fell into a coma because of type 2 diabetes. After returning to consciousness, he experienced physical-trauma-induced pneumonia, and now he requires a feeding tube. Concurrently, Maria spends most of her days helping Anthony get proper medical attention, which makes it impossible for her to work full time. The stress of their situation has seriously impacted her mental health.
“I get overwhelmed dealing with Anthony and his father,” she admits. “It’s very hard.”
Despite the drain of extensive travel and waiting, Anthony finds ways to bring lightness to his long days. On this one, when his appointment is finished, Anthony zips over to the hospital shop and grabs a chocolate bar, which his mom begrudgingly purchases. The two playfully argue over it, laughing as each tries to win the treat from one another, until they both give in and enjoy the bar together.
Likewise, outside the hospital setting, Anthony works to bring positivity into the world through advocacy. He started going to events through the Muscular Dystrophy Association (MDA), where he met adults living with LGMD who achieved prominent positions in their fields. He felt empowered when he saw they could drive cars like anyone else. The possibilities of Anthony’s future began to open as he realized he could use his intelligence and ingenuity to create his own path forward.
Passions, and a plan
“Anthony is a busy boy,” his mother says. “He is involved in so many nonprofits.” Anthony has rounded the route in MDA Muscle Walk three straight years. He’s also volunteered as a host for MDA’s fundraising event A Taste Down Under. As an ambassador for Magic Wheelchair, Anthony had his wheelchair decorated as if he was Harry Potter riding the magical creature Buckbeak in New York’s Disability Pride Parade, where he won the award for best float. When he received an overflow of gifts on his birthday, Anthony held a big back-to-school giveaway for his peers.
School is also very important to Anthony. “I like space and physics and all that stuff. It’s cool!” he says. Inspired by Stephen Hawking, he won an award for his science fair presentation on black holes. His fascination with technology also fuels his excitement for top-of-the-line computer-graphics cards. Seeing his passion in gaming technology, Microsoft invited Anthony to beta test adaptive controllers for Xbox. Anthony’s advanced studies have prompted his school to invite him to skip a grade, which he is considering, and when he finishes high school he hopes to attend Columbia University.
“I will attend college,” Anthony says. The dream of attending Columbia rises from a host of hardships and challenges that have defined Anthony’s early life. His family sought better opportunities outside of New York, moving to Florida for several years when Anthony was 7. At the time, Anthony appeared physically healthy, but he soon began to show signs that made his mom curious. He walked with a strut, but Maria assumed that was his style. His calf muscles grew dramatically. When he played soccer and other sports, he would occasionally collapse for no apparent reason. Maria could see the red flags, but she hoped they would disappear.
The family returned to New York, this time living in a shelter, while they began an investigation into Anthony’s strange symptoms. Anthony took a physical exam that raised several concerns. Blood tests were ordered, which revealed the enzyme levels in his kidneys, typically no higher than 42 micrograms, were up to 248, and his creatine kinase levels were more than 13,000. Doctors followed up with genetic tests that showed Anthony had some form of muscular dystrophy, but the family needed to wait eight weeks for more definitive results. In the meantime, Anthony started researching muscular dystrophies online. After developing a fear that he might be dying, he fell into a deep depression. Maria often heard him in his room crying.
When the results came, Anthony learned he faced a rare form of muscular dystrophy. Both of Anthony’s parents carry the same recessive gene that produces LGMD2C, which progressively weakens muscles but allows for a long life. The diagnosis gave Anthony an opportunity to come to terms with the challenges that lay ahead.
A new home, and hope
One of the most arduous tasks Anthony faced initially was climbing stairs, and the shelter where they lived was full of them. The family lived on the sixth floor, and Anthony was frightened when the elevator broke and he got stuck several times. He had no way to get into or out of his home.
The family requested to be relocated, but they had to take whatever was offered. They moved to a tiny studio in Brooklyn. Moving to a completely different neighborhood, Anthony had to leave behind his friends at school and the doctors who knew him best.
“It was hard to make friends,” Anthony says. Maria remained dedicated to her son and pursued better housing options until just this past year, when the family finally got into an ADA-accessible apartment that met their basic needs, bringing tremendous relief.
“If there’s a way I can give him a fuller life and support him in what he wants to do, I’m willing to try,” Maria says. “I’m a hands-on mom, going to PTA meetings, baking cookies, fundraising; you see me at his school every day.”
Anthony’s big heart and ability to connect with others earn him plenty of new friends, despite the challenge of frequently moving. After his first week at a new middle school, a crew of 13 boys showed up to greet him when he arrived at the corner. His new friends formed an entourage who walked side-by-side with him, clearing the way and ensuring that everyone respected their friend.
“They walked me around the school,” Anthony recalls. “It was cool!”
Back at their apartment, Anthony pulls out his camera and brings his mom, whose unwavering care helps him fulfill his dreams, into focus. A degree in science or mathematics at Columbia lies ahead on the horizon. With big dreams and a brilliant mind, Anthony is poised to make a difference in the world. He smiles and a twinkle of hope sparkles in his eyes as he presses the camera’s button.
