b'proceeded to tell us about allthethingsthatwereFor Your Plumbing & Heating Needswrong with his face, that hisnasalbridgeisflat.CALL TORO TO THE RESCUE!CALL TORO TO THE RESCUE!Thewholedynamicwas strange.Steam Heating SpecialistsBecause of Boses workNOW BOOKING!at St. Lukes, many mem- Pre-Season Boiler Start-Upsbers of the staff knew her.Maintenance and UpgradesThey used that as a wayComplete System Evaluationsto talk to me as clinically as possible [] There was onetimethatsomebody973-672-1000kept calling me Dr. Bose andItoldthemImaMousumi Bose delivering a presentation on Zellweger mother. I dont know whySyndrome. She is a tenured professor at Montclair they had to talk with meState University.soclinically.Igavebirthvision myself sitting in that cubicle after to this person. Stop talking to me likeall of this happened, says Bose, speak-hes a case study. The doctor-patienting of her previous post-doc work. I relationship would later become a ma- never had a normal mothering experi-jor focus of Boses academic research.ence ever in my life and I really wanted Bose and Betzer chose to have Ilanto experience that without this cloud of undergo major surgery, placing a tra- mortality hanging over my head.cheostomy tube in his throat. It wasIn2014,Bosetookanadjunct a very hard decision to make becauseteachingpositionatMontclairState once you have an open hole in yourUniversitywhereshetaughtinthe throat,itleavesyousomuchmoreDepartmentofNutritionandFood prone to infection, she says. But IStudies. But it was her volunteer work dont think Ilan would have lived asat Global Foundation for Peroxisomal long as he did. Disorders (GFPD) that allowed Bose to While caring for Ilan took an inor- lean into her astute research skills while dinate amount of energy, Bose says theusing her experience as someone who family was able to find comfort andlived the experience of the rare disease.joy in these very minute things. IlanBose initially offered her grant writ-would lay down on Andys chest anding skills to GFPD. I was in a room the two of them would just nap to- withalloftheseexpertsinthefield gether. We were told that he probablytalking about their research and Id be had very little vision and couldnt hearcoming from the perspective of a par-at all, she says. However, we realizedent. And they said that I should do the that he did respond well to music. Andresearchonthis.Andsobeganher Im your karaoke girl here, so I lovedresearch on families and communities singing to him. who have been deeply affected by rare Iwaspreparingtogivebirthtodiseases. I had all of these grassroots Etash. I was preparing to take care ofideas about human participant-based a typically developing child and a very,research. And I already had access to verymedicallycomplexchild.Weeager participants, she said.were buying these crazy strollers, saysWhile beginning her volunteerism Bose. At one point she recalls a mo- at GFPD, Bose met Dr. William Riz-ment when she looked down at Ilan. Izo, a medical advisory board member told him that I was preparing to havefor the foundation. In addition, Rizzo a life with you here and your brother.is the scientific director at the Child But if thats not in the cards, its ok. ItHealth Research Institute in Omaha, really did feel like he kind of relaxedNebraska.[Mousumi]hasexperi-after that. I think Ilan understood a lotenced something that no one wants to more than we thought he did. experience. [] Its a tragic situation In addition to coping with the lossthatdestroyssomefamiliesentirely. ofherson,BosefoundherselfataShehasused[Ilansdeath]toturn crossroads in her research and career.around and apply her knowledge and There was part of me that couldnt en- expertise of this rare disease in order to feature story /17'