Affected − but not defined − by muscular dystrophy: ‘We’re all the same, even if we don’t look like it’

Ram isn’t defined by the disease, but it poses a seemingly unending multitude of challenges.

He hasn’t grown in 20 years. He can no longer walk or raise his arms. He needs physical and occupational therapies daily, gets weekly infusions of a recently developed medication from a visiting nurse, takes dozens of pills for myriad health concerns and goes on several out-of-state trips a year for a medical trial designed to improve and extend a life that Duchenne typically claims by a person's early 30s.

Ram, 28, doesn’t let that stop him from living in the present. He takes an introduction to Japanese class at the University at Buffalo and pursues interests in religion, mythology and animation.

“We’re not that different from everybody else. First there’s a wheelchair, and then in my case, skin color, and that can make people uncomfortable,” said Ram, who is Indian American. “But, you know, we’re all the same, even if we don’t look like it.”

Managing the debilitating disease is a constant for Ram and his mother, Dr. Neera Gulati, a family physician who lives with him in Williamsville. Each day requires detailed preparation and planning.

Medical advances, government programs and lessons learned from other Duchenne families have made it possible for Gulati to help her son attain a sustainable quality of life. Even as a doctor, she continues to learn strategies for his health care that have little to do with medicine, but everything to do with helping her son thrive.

“We have advanced to a point I did not think we could, and I know with more emphasis on research, and the funding of research, we can make things much better,” she said. “At the same time, there are many lessons learned that can help families improve the lives of their children now.”

Gulati has traveled to seven countries to meet with specialists doing cutting-edge Duchenne research, some funded by the nonprofit she co-founded, Suneel’s Light Foundation. The foundation increases public awareness and has raised over $1.5 million that’s contributed to the research and development of medications on the market today, and others that are coming.

A progressive disorder

Duchenne, the most common form of childhood muscular dystrophy, is a progressive and fatal disorder that results in the loss of muscle function, decline in respiratory and cardiac function and wheelchair dependency.

It’s caused by a genetic mutation of one of a mother’s two X chromosomes.

The diagnosis depends on when a child shows delays. In Ram’s case, his parents slowly came to realize his body was not developing normally.

“Suneel was born healthy, normal and everything was good,” Gulati said. “But when Suneel was 6 months to a year, I noticed there was something wrong muscularly. He was making the motor milestones, but something didn’t seem right.”

“The diagnosis for Duchenne was devastating,” she said.

Life changed quickly. She and then-husband Dr. Raghu Ram researched the disease, asked questions and found a parents organization, Parent Project Muscular Dystrophy, which was crucial in understanding how to manage their son’s condition and advocate for his needs. Key was the Medicaid waiver program, which allowed them to access care and services provided by New York.

Ram was put on a steroid to decrease the inflammatory component of the disease and improve muscle strength and function. It also inhibited his ability to grow.

“It wasn’t like he needed assistance with everything right from the beginning, but over time he needed more assistance with each of the activities,” Raghu Ram said.

“It took a long time for Suneel to get ready in the morning, but some of that was Suneel and his father spending time together, and making it fun and joyful,” recalled Pavani Ram, Suneel’s stepmother.

Aides are critical

Up to three aides, paid for by the Medicaid waiver program, underpin Ram’s care. They help him with physical and breathing exercises, personal hygiene, food preparation and transport in a specially equipped van.

Ram takes around 40 pills daily, down from 57 earlier this year. The medications include steroids, anti-inflammatories, and others for strengthening bones and muscles, to address reflux, to protect the heart and to avoid kidney stones.

Ram went to Maple East Elementary School and later Maple West, with help from an aide, as well as Heim Middle School and St. Joseph’s Collegiate Institute. St. Joe’s, where Ram helped announce basketball, football and lacrosse games, was the best experience, he said.

Fitting in with other students at school was made harder by being in a motorized wheelchair and shadowed by an aide, Gulati said.

Social isolation is another unwanted byproduct of Duchenne, something Ram has experienced throughout his life.

“By kindergarten, Suneel couldn’t do a lot of things, like go outside and play during recess,” Gulati said. “He wasn’t being asked to do things with other kids. With each year, he seemed to become more isolated.”

“Sometimes we try to bridge the gap for him, but you can’t do that for very long,” Raghu Ram said. “You just have to be very understanding that he’s kind of a unique kid, and when there is someone interested in spending time with him, we’ll make the best of it.”

Ram has enjoyed fun times with the family his father started and is a big part of his life – stepmother Pavani and sisters Janani, 18, and Nandini, 16. There were go-kart rides, laser tag, arcade games and lots of photo booth pictures taken when they were younger.

“I think when we were little, we couldn’t play with him if he were walking, or play hide and go seek or piggyback rides,” Nanani Ram said. “But he is our brother, like any other brother that siblings would have. He spends time with us, goes with us to the movies, and does brother and sister things with us.”

“He is an amazing young man,” his father said.

Ram’s determination led him to Canisius College. He earned a bachelor’s degree in digital media arts in 2021, but the weakness in his arms and lack of dexterity has made work in that field all but impossible.

“He walks a line of recognizing what is happening in his life,” his mother said, “but also says he has his whole life ahead of him and should be working for a job.”

Sleeping is difficult

Getting air ventilation is critical for prolonging the lives of males with the restrictive lung disease.

A cough assist machine helps Ram clear his airways several times a day, while a self-adjusting ventilator helps maintain his breathing. At night, he sleeps with a mask hooked up to tubes and a high-pressure ventilator.

Because the machine is loud, and the mask is uncomfortable and makes his face itchy, Ram wakes up many times a night, summoning Gulati with a buzzer for help. Gulati often gets by on less than four hours of sleep.

“A good night for me is if I’m only woken up two or three times,” she said. “But everything he goes through is much more than I go through.”

Meeting with researchers

Gulati’s pursuit of treatments and a potential cure for the disease have taken her to meet with researchers in Japan, France, England, the Netherlands, Australia, Denmark and Canada.

“I think she has gone to meet every leading researcher in the world on this subject,” said Ken Manning, Suneel’s stepfather, though he and Gulati are divorced.

While in The Hague, Manning said Gulati went to the lobby of a Dutch company working on a promising therapy, and announced she wasn’t leaving until the CEO talked to her. He did.

“When your son has Duchenne muscular dystrophy, you are forced to do things that you would never have done otherwise,” Gulati said. “I would never be on a foundation, I would never want to connect with people, I would never go to conferences.

“I’m an introvert, I don’t like to do these things,” she said. “It’s just so different from my personality, but I would do anything for Suneel. He brings a lot of joy into my life, and I can’t imagine a better son.”

Manning, who is vice president of Suneel’s Light Foundation, recalled with amazement years ago when Ram, hospitalized with a broken femur and without painkillers, announced he had to do his homework and began using flash cards with multiplication tables.

“Suneel,” he said, “is an inspiration every day.”

Religion provides purpose

Religion gives Ram a comforting sense of the unknown.

He grew up through high school regularly attending religious school at the Hindu Cultural Society of Western New York. But in recent years, Ram became drawn to Christianity. He was baptized in September at North Presbyterian Church in Amherst.

It was a major decision for Ram, who frequently attends services in area churches, and has struggled to have his beliefs that infuse Hinduism and Christianity heard. He also takes Hindu classes online, occasionally attends the Hindu temple with his father and has long been interested in other world religions, including Buddhism and Jainism.

“Believing in God gives me the strength to overcome whatever life throws my way,” Ram said. “It provides deeper meaning to life, because it helps deal with a lot of things like what happens after we die.”

At a Vessel Church service in the Eastern Hills Mall last May, Ram, with an aide next to him, sang along to the music.

“I like the atmosphere,” Ram said. “That was the first thing I noticed when I started coming here − the high energy.”

Gulati watched with surprise at first as her son drew closer to Christianity.

“I think he’s looking for meaning because it gets harder the older he gets,” his mother said.

Ram sings songs at porch gatherings and open mics with his band that have a spiritual quality or promote peace, like “Imagine,” his favorite song, and “Hallelujah.” The other members are a relative and a friend he’s had since middle school.

“He sang ‘Hallelujah’ at the Irishman Pub, and the crowd was so happy for him,” Gulati said. “People came up and told him he did a great job.”

Ram told his story to Anthony Zuicker, creator of the “CSI” franchise, who wrote the comic novel “Soaring: A Story of Courage.” The book, published in 2023, like other topics Zuicker writes for the series, has been distributed free to schools.

Ram has spoken at schools, churches and temples since the book came out.

“I think there are a lot of things I can do to have a positive effect on the world,” Ram said, “and the book is a big platform that I have to do that.”

This story was produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. Read related stories at nymisojo.com.

COMING MONDAY: Caregivers share lessons they have learned while assisting Suneel Ram.