Although 31-year-old Allison Levine was raised in Arlington Heights, Illinois, she feels very much at home at the University of Chicago Medicine. At age 11, Levine, AM'05, a pediatric social worker, was diagnosed with Crohn's disease, an inflammatory bowel disease that can be both painful and debilitating, and sometimes may lead to life-threatening complications.

As a teenager, she transferred care to the University of Chicago Medicine and at that time became one of the youngest patients of Stephen Hanauer, MD, a world leader in the treatment of inflammatory bowel diseases. “I basically grew up there,” she says. “They knew my family and when I became a graduate student there, I went to my appointments by myself and the nurses would always ask about my parents.”

Inspired by the care she received, her experience as a neonatal intensive care social worker, and her involvement as a volunteer social worker for children with Crohn’s, Levine two years ago established the first pediatric gastrointestinal (GI) family support fund at the medical center.

To raise money for the fund, Levine hosts an annual bowl-a-thon, which has generated more than $10,000 to support bus fare, parking, food, and educational materials for needy families of patients at the University of Chicago Medicine Comer Children’s Hospital.

“So many parents worry about where to get an affordable meal or how to pay for bus fare for weeks on end so they can take care of their child in the hospital. Some parents might even have to quit a job when a child must be hospitalized for a month or more, and then they have trouble paying household expenses like rent or utilities.” she says. “For families who don’t have a lot, the extra help means a great deal.” 

Long before Levine established the fund at Chicago, she and her family had been supporting GI research and pediatric programming in various ways, including Levine’s role as a youth ambassador for the Crohn’s and Colitis Foundation of America.

“Right from the beginning this illness has been a part of me,” she says. “I never once thought it was something that needed to be hidden or that I should be ashamed of. But I also don’t feel like it defines me completely either.”

Often, people who suffer from GI diseases don’t talk about it, viewing their condition as embarrassing or inappropriate conversation, but Levine believes no one should have to deal with it on his or her own or only in private. Having endured two surgeries, she recently passed the five-year mark since her last surgery, which for most patients usually means a 50 percent chance of not needing an additional surgery.

“The truth is, you don’t know how badly you felt until you feel better, because it becomes the status quo,” she says. “I remember after I had my first surgery I had so much energy and could eat different foods, and it was a wonderful thing.”

Levine’s goal is to make the pediatric GI family support fund at the University of Chicago Medicine self-sustaining. Ideally she’d like it to grow from the support she currently receives from friends and family to hundreds more people who are also passionate about helping others with the condition.

“I’ve seen how generous people are,” she says. “People I barely know come to the bowl-a-thons and have made very generous donations. I feel so grateful to the University of Chicago for my medical care that I am honored to generate this support for its patients.”

December 2013