Located in a quiet neighborhood in the town of Newburgh is the Roopchandsingh household. The household is a colorful array of family photos, video games, animals, and more. Their little dog, Rosco follows you around, curious to know what your business is in the house. The family welcomes you in like you’re one of their own. Despite all the pleasantries, the past few years haven’t been easy.
Matthew Roopchandsingh sits in an electric wheelchair every day, hooked up to equipment to help him do basic everyday activities. Even though he is 25, his body is small and weak. His hands are shriveled and exhausted from years of illness. Matthew started to exhibit symptoms of Duchenne muscular dystrophy when he was six.
Duchenne muscular dystrophy is a genetic disorder that weakens your muscles gradually over time. It is caused by a lack of dystrophin. Dystrophin is a protein that keeps your muscle cells intact. Currently there is no confirmed cure. But to his brother, Michael, he is a “conqueror.”
“Throughout all of the roadblocks,” said Michael. “He still finds a way.”
Typically, those who have Duchenne muscular dystrophy pass away young. Matthew has lived through many doctors telling his family, “your son will not make it past 20, he will die before the age of 20.”
For Matthew, saying one word can be physically toiling. He gasps for air and pulls out one word at a time whenever addressed. When speaking becomes exhausting, Michael speaks for Matthew.
Matthew currently uses a noninvasive ventilator 24 hours a day. As the years have gone by, Matthew has become more dependent on his ventilator.
“Without it I can’t breathe and I’m like a fish out of water,” said Matthew. “I’ve had some incidents where I almost passed out because of a disconnection.” Occasionally using a suction tube, Michael has to stop and remove saliva from Matthew’s lungs.
Regardless of his disease, Matthew is just a regular guy living life. Matthew has loved to play video games, since he was young. “It’s kind of ironic that he was beating all the older kids and everybody,” said Michael. “He was just winning them out.”
When he couldn’t partake in outdoor activities like other children, Matthew would play videogames to pass the time. In his lifetime, he’s won and finished multiple video games. One of his most memorable successes is finishing Zelda. Someday, he hopes to become a successful video game streamer.
“He wants to become the first kid,” said Carol. “Totally paralyzed, on a wheelchair, on a ventilator doing this. He wants to become an inspiration to other kids to show them, even though they’re disabled, life goes on.”
When asked about his interest in video games, he presents his elaborate setup for video game streaming. On his desk are three large computer screens, an LED light to illuminate his face, and a camera to broadcast him playing. His mother, Carol, tries to inject into the conversation a bit about Matt’s other interest in rap music. Matthew breathes out in a whisper, “this first.”
Although it can be difficult to use his hands, Matthew still plays video games and uses his cell phone with his hands. When typing on his cell phone, he is propped up on a pillow on a table. Occasionally his hands fall and his family help put his hands back into their original position. To go online, Matthew also uses a device that responds to the direction of his eyes. For Matthew, the internet is freedom from the strains of reality and the outside world.
Matthew recently returned from a 20 day stay at the hospital. Currently insurance covers their hospital stays, but there still is a financial toil. The Roopchandsinghs have been trying to raise money for a handicap accessible bedroom on the first floor of their home for years through GoFundMe.
Because of his recent hospital visit, Carol had to take three months of unpaid leave from her job as a nurse to care for Matthew. Michael occasionally works as a barber, but spends most of his time being Matthew’s full-time caretaker.
Over the years, the Roopchandsinghs have lost many caretakers due to their inexperience working with someone in Matthew’s conditions. Currently Michael and Carol are Matthew’s full-time caretakers.
Michael and other members of the family carry Matthew up to his room every night. Occasionally, they awaken throughout the night and adjust Matthew’s body in order to help him sleep comfortably. Although caring for Matthew takes a lot of time and effort, his family doesn’t see him as a burden. Michael hopes to someday see his “baby brother” have an easier life. The day a cure becomes possible, Matthew dreams of being able to experience the world on his own two legs.