TURNING LOSS INTO HOPE by Donny Levit
The death of Ilan Betzer inspires his mother to delve into a rare disease.
On October 23, 2011, Mousumi Bose and her husband, Andy Betzer, lost their 14-month-old son, Ilan, when he succumbed to a rare, rapidly progressive disorder called Zellweger syndrome.
Two weeks later, Bose gave birth to a second son, two days after surviving being hit by a car while walking down 6th Avenue in Manhattan. “They had an EMT come, and I remember explicitly saying ‘I can’t lose another child.’ And they said, ‘What do you mean another child?’ And I said that my son died two weeks ago,” recalls Bose.
That second son, Etash, is now 11 years old and a 6th grader at Maplewood Middle School. Three years later, Bose and Betzer welcomed their third son, Kiran, now 8 years old and a third grader at Tuscan Elementary school. The Betzer family moved to Maplewood in 2017.
Ilan Betzer’s memory continues to be present in the Betzer family. One classic family photo includes a portrait of Bose, Betzer, Etash and Kiran, along with Bose’s sister and parents – who proudly cradle a portrait of Ilan. He also continues to be referred to as their oldest son. Ilan’s life may have been brief, but the family continues to draw deep meaning from the time they spent with him. In fact, the experience of losing her first child to a rare disease reshaped and redirected Bose’s career.
Born in Baltimore, Bose grew up in Columbia, Maryland and attended the University of Maryland where she received a B.S. in physiology/neurobiology. She and Betzer, who met during their undergraduate years, relocated to New Jersey when Bose was studying for her Ph.D. in Nutritional Sciences at Rutgers; Betzer worked as a motion picture technical editor.
While pregnant with Ilan, Bose focused on her post-doc at New York Nutrition and Obesity Center at St. Luke’s Roosevelt Hospital. Coincidentally, she gave birth at the 59th Street hospital location.
At the 20-week anatomy scan, Bose and Betzer learned that their child had clubbed feet. “Sometimes that can be indicative of an underlying genetic condition,” says Bose. “The pathogenic genetic mutation is so small that it would not have been detected [during an amniocentesis]. They would only be able to see larger chromosomal abnormalities like Down Syndrome.”
Concerned over Ilan’s growth rate, the doctors induced labor at 38 weeks. “As soon as he was born, they noticed that he had very low muscle tone. The term they used was floppy,” says Bose.
Although the doctors planned to whisk Ilan away for testing, Bose insisted that she hold him before he was evaluated. “I finally started to realize there’s something definitely wrong when I went to visit him in the NICU,” she says. “They had him attached to a lot of monitors and things like that. I didn’t know the severity of what was happening until a couple of days into it.”
The National Institute of Health (NIH) describes Zellweger Syndrome as “a rare inherited disorder characterized by the absence or reduction of functional peroxisomes,” which are vital to metabolic activity as well as breaking down toxic materials in cells.
“We were told there was definitely a genetic disorder going on,” says Bose. “And then the doctors proceeded to tell us about all the things that were wrong with his face, that his nasal bridge is flat. The whole dynamic was strange.”
Because of Bose’s work at St. Luke’s, many members of the staff knew her. “They used that as a way to talk to me as clinically as possible […] There was one time that somebody kept calling me ‘Dr. Bose’ and I told them I’m a mother. I don’t know why they had to talk with me so clinically. I gave birth to this person. Stop talking to me like he’s a case study.” The doctor-patient relationship would later become a major focus of Bose’s academic research.
Bose and Betzer chose to have Ilan undergo major surgery, placing a tracheostomy tube in his throat. “It was a very hard decision to make because once you have an open hole in your throat, it leaves you so much more prone to infection,” she says. “But I don’t think Ilan would have lived as long as he did.”
While caring for Ilan took an inordinate amount of energy, Bose says the family was able to “find comfort and joy in these very minute things. Ilan would lay down on Andy’s chest and the two of them would just nap together. We were told that he probably had very little vision and couldn’t hear at all,” she says. “However, we realized that he did respond well to music. And I’m your karaoke girl here, so I loved singing to him.”
“I was preparing to give birth to Etash. I was preparing to take care of a typically developing child and a very, very medically complex child. We were buying these crazy strollers,” says Bose. At one point she recalls a moment when she looked down at Ilan. “I told him that I was preparing to have a life with you here and your brother. But if that’s not in the cards, it’s ok. It really did feel like he kind of relaxed after that. I think Ilan understood a lot more than we thought he did.”
In addition to coping with the loss of her son, Bose found herself at a crossroads in her research and career. “There was part of me that couldn’t envision myself sitting in that cubicle after all of this happened,” says Bose, speaking of her previous post-doc work. “I never had a normal mothering experience ever in my life and I really wanted to experience that without this cloud of mortality hanging over my head.”
In 2014, Bose took an adjunct teaching position at Montclair State University where she taught in the Department of Nutrition and Food Studies. But it was her volunteer work at Global Foundation for Peroxisomal Disorders (GFPD) that allowed Bose to lean into her astute research skills while using her experience as someone who lived the experience of the rare disease.
Bose initially offered her grant writing skills to GFPD. “I was in a room with all of these experts in the field talking about their research and I’d be coming from the perspective of a parent. And they said that I should do the research on this.” And so began her research on families and communities who have been deeply affected by rare diseases. “I had all of these grassroots ideas about human participant-based research. And I already had access to eager participants,” she said.
While beginning her volunteerism at GFPD, Bose met Dr. William Rizzo, a medical advisory board member for the foundation. In addition, Rizzo is the scientific director at the Child Health Research Institute in Omaha, Nebraska. “[Mousumi] has experienced something that no one wants to experience. […] It’s a tragic situation that destroys some families entirely. She has used [Ilan’s death] to turn around and apply her knowledge and expertise of this rare disease in order to help other families.”
Rizzo mentored Bose as a junior investigator on an NIH-funded program to research Zellweger Spectrum Disorders (ZSD). “She ended up contributing significantly to the understanding of ZSD,” says Rizzo. “In one case, it was because she took a view of what happens to families and how they deal with this kind of a tragic, fatal disease – from the caretaker point of view. Most of the research on these rare diseases obviously is focused on the patient’s symptoms. There are very few research projects that have actually looked at the effect of these diseases [on the patient’s family].”
While Bose initially focused on ZSD research, her approach has been applied elsewhere. “Now other diseases are being looked at in a similar fashion. Mousumi was early on doing this,” says Rizzo. “She has contributed both qualitative and quantitative research, which is a tremendous advantage for understanding some of these diseases in ways we’ve never had in the past.”
Now tenured at Montclair State University, Bose is particularly proud of her scientific paper on Zellweger Spectrum Disorder treatment guidelines, which was published in 2016. In 2021, she published the “Circle of Care Guidebook for Caregivers of Rare and Serious Illnesses.” And just this year, she submitted the “Voice of the Patient” report to the FDA to facilitate patient-focused drug development in a specific rare disease. The document was released to the public this year.
In both her family and professional life, Bose can weave her humanism with her sophisticated research analysis. Her sense of humor and generosity to her community and family is a significant part of what makes Bose tick. She’s a huge music fan, and she and Andy try to catch the indie rock band Guided by Voices whenever they come to town. The band is led by 65-year-old Robert Pollard, beloved for his famous high-leg kicks he peppers throughout concerts. “My life goal is to be able to do those kicks when I’m [Robert Pollard’s] age. It’s mainly the reason I work out,” says Bose, an avid kickboxer.
The Betzer family has one annual ritual that sums up the generous core of the family. Every August 18, they pick up their order at Gigi’s Cupcakes on Springfield Avenue to celebrate Ilan’s birthday. But they don’t take those cupcakes home with them. Instead, they make an annual visit to the Pediatric Intensive Care Unit at Newark Beth Israel Medical Center. “That’s where Ilan passed away. He spent a lot of time there and we like to bring cupcakes or lunch each year. We might do something bigger when he turns 15,” she says. The family is committed to celebrating Ilan’s life and making sure his memory remains alive in the family and in the community who knew and loved him.
Donny Levit is a writer and Maplewood resident. He is the author of Rock n’ Roll Lies, 10 Stories. Check out his radio shows on Instagram: @undertheinfluenceradio, @newishradio, and @kindofpoolradio.