Toby Lowenbraun is a typical, active 7-year-old. He was bouncing from chair to sofa in his family room last week, as his mom video-chatted with the Enterprise. It’s hard to imagine that this is the same Toby who, less than a year ago, was diagnosed with Crohn’s disease.
The usual age of onset for this chronic inflammatory bowel disorder is adolescence or young adulthood, but it sometimes appears in younger children. Toby has not only taken his Crohn’s diagnosis in stride, he has also established a race to raise funds for a cure. On Sunday, March 21, with the help of his family, his supportive neighbors in the Richmond Hill townhouse complex, and the Dows Lane school community, he raised $798 for the Crohn’s & Colitis Foundation. His parents, Lisa and Matt Lowenbraun, pledged to match that amount.
The race capped off a memorable year for the Lowenbrauns, for reasons unrelated to the pandemic. In spring 2020, Toby, who was in first grade at Dows Lane, suddenly had little energy. Then, he developed symptoms that landed him in the emergency room.
“We stayed overnight at the hospital,” his mother said. “It was scary because it was the middle of the pandemic. At first, we actually thought it was related to the pandemic.” Instead, Toby was diagnosed with Crohn’s disease.
Crohn’s can cause serious inflammation and lesions in any part of the gastro-intestinal tract, but most often in the small or large intestine. While the exact cause of Crohn’s disease remains unknown, researchers believe it could be an interaction of genetics, the immune system, and environmental factors. The most obvious symptoms are abdominal pain, diarrhea, and fatigue, and as time goes on it can cause damage to other parts of the body in addition to the digestive tract. The disease affects an estimated three million Americans, equally divided between men and women, and it can run in families.
Toby is in remission, thanks to infusion therapy that he gets every six weeks at the Pediatric Inflammatory Bowel Disease Center at New York-Presbyterian Morgan Stanley Children’s Hospital in upper Manhattan. In fact, he has been feeling so much better lately that he was enthusiastic about all the outdoor activities the kids were dreaming up during the pandemic in his close-knit neighborhood.
“Some of the older girls put on a play,” his mom said. “They had a Richmond Hill carnival. They raised $100 for Abbott House [the Irvington-based social service agency], and $50 for ‘save the polar bears.’”
As for Toby, his passion is running. His dad devised a challenging running course for Toby and his sister, Hannah, a fourth-grader at Main Street School. Toby called the route “the lap of doom.”
“That gave Toby the idea, ‘Maybe I could raise money for Crohn’s and have people run the lap of doom,’” his mom said.
He made fliers and posted them around the community. It started as just a Richmond Hill event, but then parents from the Dows Lane community started talking about it.
“During our parent-teacher conference, his teacher said to me, ‘I’m very excited about the race on Sunday [March 21],’” Toby’s mom said. The teacher asked if she could share the fliers online. Then, parents who were listening in to the classroom discussions heard kids talking about the race in class, and someone came up with an idea for holding a bake sale at the race.
Big sister Hannah, who had run in community races before, decided to organize the registration booth and divide the runners into age groups. Toby’s mom and sister blew up 96 balloons to create a decorative arch. On race day, the weather was mild — perfect for running.
“I thought there would be 35 people or something,” Toby said. Lisa Lowenbraun counted 106.
Toby had set an entry fee of 50 cents, and was optimistic that he could raise $25. But people were coming up to the registration booth and handing out $20 bills, and not waiting for change. “His father and I had committed to match what was collected,” his mom said. The proceeds, including from the bake sale, were $798. Toby wants the race to be an annual event.
Had Toby been diagnosed with Crohn’s disease 10 years ago, his situation might have been different. “It’s almost like he doesn’t have Crohn’s, except for the days we go to the hospital,” his mom said. “They have new treatments that put [patients] in remission immediately. You almost don’t have to live in fear of a relapse.”
The state-of-the art treatment for Crohn’s uses “biologics.” This is a class of drugs administered, in Toby’s case, by intravenous infusion, a process that takes a couple of hours each time. According to the Crohn’s & Colitis Foundation, biologics are laboratory-created antibodies that stop certain proteins in the body from causing inflammation. The goal with the infusion treatments is to reduce the inflammation, promote healing, and keep the patient in remission as long as possible.