b'Turning Loss into HopeThe death of Ilan Betzer inspires his mother to delve into a rare disease.BY DONNY LEVITMousumi Bose and Andy Betzer with baby Ilan.O nOctober23,2011,a portrait of Bose, Betzer, Etash and Kiran, alongcondition, says Bose. The pathogenic genetic mu-MousumiBoseandherwith Boses sister and parentswho proudly cradletation is so small that it would not have been de-husband,AndyBetzer,a portrait of Ilan. He also continues to be referred totected [during an amniocentesis]. They would only losttheir14-month-oldas their oldest son. Ilans life may have been brief, butbe able to see larger chromosomal abnormalities like son,Ilan,whenhesuc- the family continues to draw deep meaning from theDown Syndrome.cumbedtoarare,rap- time they spent with him. In fact, the experience ofConcerned over Ilans growth rate, the doctors in-idlyprogressivedisorderlosing her first child to a rare disease reshaped andduced labor at 38 weeks. As soon as he was born, called Zellweger syndrome.redirected Boses career. they noticed that he had very low muscle tone. The Two weeks later, Bose gave birth to a second son,Born in Baltimore, Bose grew up in Columbia,term they used was floppy, says Bose. Although the two days after surviving being hit by a car whileMaryland and attended the University of Marylanddoctors planned to whisk Ilan away for testing, Bose walking down 6th Avenue in Manhattan. They hadwhere she received a B.S. in physiology/neurobiol- insisted that she hold him before he was evaluated. I an EMT come, and I remember explicitly saying Iogy. She and Betzer, who met during their under- finally started to realize theres something definitely cant lose another child. And they said, What dograduate years, relocated to New Jersey when Bosewrong when I went to visit him in the NICU, she you mean another child? And I said that my sonwas studying for her Ph.D. in Nutritional Sciencessays. They had him attached to a lot of monitors and died two weeks ago, recalls Bose. at Rutgers; Betzer worked as a motion picture tech- things like that. I didnt know the severity of what That second son, Etash, is now 11 years old andnical editor. was happening until a couple of days into it.a 6th grader at Maplewood Middle School. ThreeWhile pregnant with Ilan, Bose focused on herThe National Institute of Health (NIH) describes years later, Bose and Betzer welcomed their thirdpost-doc at New York Nutrition and Obesity CenterZellwegerSyndromeasarareinheriteddisorder son, Kiran, now 8 years old and a third grader atat St. Lukes Roosevelt Hospital. Coincidentally, shecharacterized by the absence or reduction of function-Tuscan Elementary school. The Betzer family movedgave birth at the 59th Street hospital location. al peroxisomes, which are vital to metabolic activity to Maplewood in 2017. At the 20-week anatomy scan, Bose and Betzeras well as breaking down toxic materials in cells.Ilan Betzers memory continues to be present inlearned that their child had clubbed feet. Some- We were told there was definitely a genetic dis-the Betzer family. One classic family photo includestimes that can be indicative of an underlying geneticorder going on, says Bose. And then the doctors 16/ matters magazine / fall 2023'