Suneel Ram is living with Duchenne muscular dystrophy, which necessitates a wide variety of medical supports and continual lifestyle adjustments. 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. At age 28, Ram has outlived many of his peers, as the disease sometimes claims their lives in their early 20s.
Strengthening muscles
Registered nurse Neil Paczkowski begins a saline flush after a round of Viltepso infusion at Suneel Ram’s home in Williamsville, New York. Ram receives 3,200 milligrams of the treatment, which helps strengthen his muscles, every week. Living with Duchenne muscular dystrophy necessitates a variety of medical supports and continual lifestyle adjustments for Ram. 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. At 28, Ram has outlived many of his peers, as the disease often claims their lives in their early 20s. (Libby March/Buffalo News)
A spiritual seeker
Ram listens as parishioners sing praise music while attending Vessel Church in Buffalo. Spirituality is one of Ram’s academic interests but also a comfort to him through the trials of living with Duchenne. He was raised Hindu but has grown more interested in Christianity, Jainism and Buddhism over the last several years. Some of his attempts to find community in church spaces have been rebuffed as some people do not want to discuss religions other than Christianity, but he continues to seek connection. (Libby March/Buffalo News)
Together through trials
Ram and his mother, Dr. Neera Gulati, joke as Gulati adjusts a blanket around his shoulders while visiting Oishei Children’s Hospital for Ram’s twice-annual bone infusion in Buffalo. Ram receives bone infusions every six months, receiving zoledronic acid, which helps strengthen his bones, and acetaminophen, through his port. Ram’s sustained health can be attributed in part to Gulati’s tireless advocacy. Gulati has traveled to seven countries to meet with specialists working on cutting-edge Duchenne research, some funded through the Suneel’s Light Foundation, with which both Gulati and Ram are involved. Suneel’s Light raises public awareness about Duchenne and has raised over $1.5 million that’s contributed to the research and development of medications on the market today, and others coming for older boys. (Libby March/Buffalo News)
Biannual infusions for stronger bones
Ram looks down as a nurse presses a protective bandage over his port for his bone infusion at Oishei Children’s Hospital in Buffalo in 2023. Ram receives bone infusions every six months, receiving zoledronic acid, which helps strengthen his bones, and acetaminophen, through his port. (Libby March/Buffalo News)
A moment of rest
Gulati doses off as her son waits to receive a bone infusion at Oishei Children’s Hospital in Buffalo in 2023. Gulati, who has trouble finding night aides for Ram, often gets up to help him throughout the night, cutting into her sleep, which takes a toll. (Libby March/Buffalo News)
A long day
Ram motors up the ramp of his specially-equipped van, leaving a pizza shop after stopping for dinner with his mother, Gulati, and aide, David Rowe, before heading to their hotel in Worcester, Mass. They have driven over 400 miles to take Suneel to the Duchenne Muscular Dystrophy program at UMass Memorial Medical Center. Driving time, with stops, was almost eight hours. (Libby March/Buffalo News)
Managing medical appointments
Dr. Gulati holds her phone out as Suneel talks with an office administrator about a medical appointment, urging Ram to advocate for himself as they ride in his specialized van to visit the Duchenne muscular dystrophy program at UMass Memorial Medical Center. (Libby March / Buffalo News)
A strict routine
Ram takes a pill, assisted by one of his caregivers, Jian Clermont, at home in 2023. Every day, Ram takes around 40 pills, medication as well as vitamins, to give his body the best possible nutrients and combat against the debilitating effects of Duchenne muscular dystrophy. He has meds with all three meals and at bedtime, and remembering when to dispense them requires careful planning, since some have to be given hours apart from others. There is a specific time of day for most everything, said one of Ram’s aides, David Rowe. “Suneel likes routine,” Rowe said. “He has grown up with it.” (Libby March/Buffalo News)
Braces for muscle stretching
Ram’s Yorkie terrier, Thor, perches atop an ottoman next to his pair of leg braces, used to support Ram’s feet while helping stretch his leg muscles, at home in 2023. (Libby March/Buffalo News)
Preparing Suneel’s travel chair
Ram watches as his dad, Raghu Ram, left, and one of his aides work to set up a travel power chair for an upcoming trip, at Suneel and his mother Dr. Neera Gulati’s home. Preparation is key for managing the many moving parts of Ram’s life, as he uses specialized equipment to stay mobile and comfortable. (Libby March/Buffalo News)
Visiting the park
Ram and his aide, David Rowe, laugh and talk as they take a walk with Suneel’s Yorkie terrier, Thor, at a park in Williamsville in 2023. Two and sometimes three aides, paid for by the Medicaid waiver program, have been critical in helping with daily care. Aides help him with physical and breathing exercises, washing, brushing and other bathroom needs, transfers to and from his power chair, special food preparation and transport in his specially equipped van. Rowe has been working with Ram for two years, and the two often chat about movies, comics and more. (Libby March/Buffalo News)
A man and his dog
Ram smiles as Thor jumps up to nuzzle his face. He has said having a pet can be helpful to support his mental health and make life more enjoyable. “It can be helpful to pet a cat or a dog … animals can do funny things.” (Libby March/Buffalo News)
40 pills a day
Jian Clermont, one of Ram’s aides, collects some of his daily medications and vitamins to accompany his lunch in 2023. Ram takes around 40 pills daily, down from 57 earlier this year. The medications include steroids, anti-inflammatories and medicines for strengthening bones and muscles, to address reflux, to protect the heart and to avoid kidney stones, as well as vitamins and supplements. “It’s like having a drugstore at home,” said Gulati. (Libby March/Buffalo News)
Friends since middle school
Ram and his friend, Stephen Heinzmann, practice music on the back porch of Ram’s home. The two have been friends since middle school, and Heinzmann now plays as part of Ram’s band, Suneel and the Stars. (Libby March/Buffalo News)
Meeting with Duchenne specialist Dr. Brenda Wong
Ram looks toward his mother as he talks with Duchenne muscular dystrophy specialist Dr. Brenda Wong, center right, at the end of a second full day of medical assessments at UMass Memorial Medical Center in Worcester, Mass. last year. Ram has been seeing Wong since 2008. Ram and Gulati make a workday-long drive with an aide once a year to the Duchenne Program at UMass Chan Medical School in Worcester, Mass., led by Wong. Eleven foundations, including Suneel’s Light, came together to establish Wong’s clinic. (Libby March/Buffalo News)
Long nights
Shortly after 5:30 a.m., Neera Gulati doublechecks her son’s breathing machine in his bedroom. Getting appropriate air ventilation is critical for prolonging the lives of boys and men living with Duchenne muscular dystrophy. Since it is hard to find aides to help through the night hours, Gulati often sleeps in a recliner down the hall so she can be easily reached. If it senses it is not functioning properly, the machine has an alarm that alerts a caretaker to check and ensure Ram is properly breathing. “I think he’s only slept five hours straight twice in the last eight months that I can remember,” Gulati said later. “His lung disease is very difficult.” (Libby March/Buffalo News)
Adjusting the breathing mask for better sleep
At close to 2 a.m., Dr. Neera Gulati adjusts Ram’s breathing machine mask in his bedroom. “A good night for me is if I’m only woken up two or three times,” his mother said. “But everything he goes through is much more than I go through.” To compensate, she relies on caffeine and tries to catch up on sleep when she can. “I’m glad she’s there to help out at night if I need anything,” Ram said of his mother. “… I’m just grateful she is so supportive.” (Libby March/Buffalo News)
Solace in faith
Suneel Ram grins as he listens to a sermon at Vessel Church in Buffalo, March 24, 2024. Spirituality is one of Ram’s academic interests, but also a comfort to him through the trials of living with his disease. He takes a broader worldview of spirituality than a purely Christian ideology. However, he continues to seek purpose and community in church and Bible study spaces. “You are not alone. You always have God,” Ram said. “Believing in God gives me the strength to overcome whatever life throws my way. It provides deeper meaning to life, because it helps deal with a lot of things like what happens after we die, and things like that.”
Family fun
Suneel Ram chats with his younger sister, Janani Ram, 18, during a visit with his father Raghu Ram’s family last summer. (Libby March/Buffalo News)
Suneel and the Stars
Suneel Ram’s band, Suneel and the Stars, plays a yard concert for about 30 friends and family at Suneel and Neera Gulati’s home in Williamsville, Oct. 7, 2023. Ram and his band also have performed at Irishman Pub in Williamsville and an open mic night at the Clarence Center Coffee Company and Café. The members of the band are a relative and a friend he’s had since middle school. Some of Ram’s favorite songs to perform are John Lennon’s “Imagine,” Leonard Cohen’s “Hallelujah” and “Over the Rainbow,” originally recorded by Judy Garland. (Libby March/Buffalo News)
Celebrating Suneel’s 27th birthday
Ram gets a hug from his aunt, Kanika Gulati, during his 27th birthday party at home in Feb. 2024. Duchenne muscular dystrophy frequently claims the lives of young men in their early 20s or sooner, so Ram’s birthday into his late 20s is extra cause for celebration. He is now 28. (Libby March/Buffalo News)
A sense of wonder
Ram gazes at galactic photographs seen at a planetarium inside the EcoTarium in Worcester, Mass.. After eight hours of travel the day before and a full day of medical appointments in Worcester, Ram was eager to make it to the planetarium show, which was not playing when they tried to see it during last year’s excursion to Worcester. Changes to the plan can be difficult, but it is careful planning that allows Ram to seek wonder worldwide, traveling far with his mother, Dr. Neera Gulati, most recently visiting Dubai. (Libby March/Buffalo News)
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