Preschool wasn’t easy for Aaron Weinberg.
At age 3 he was diagnosed with ulcerative colitis, a disease inherited from his father, Mike, and his paternal grandfather, Robert, that began to cause symptoms when he was 2. But the then-tentative diagnosis — ulcerative colitis can mimic Crohn’s disease — did not bring an effective treatment.
“He was one sick little boy,” said his mother, Diane, whose other two sons, Samuel and Isaac, do not have the disease.
Aaron had to visit the hospital enough that “there was a Weinberg parking space, I’m pretty sure,” she said. “We could direct doctors who looked lost … because we were there all the time.”
A decade later, Aaron will celebrate becoming a bar mitzvah at Beth Shalom on Saturday, May 27, fresh off his participation in the annual Take Steps for Crohn’s & Colitis walk the previous weekend at Dunwoody’s Liane Levetan Park at Brook Run.
The Crohn’s & Colitis Foundation of America walk — for which Aaron this year led his own team, the Fantastic Flushers, instead of being part of a team organized through his father’s office — served as the Sandy Springs resident’s mitzvah project and helped bring to a conclusion a successful seventh grade in the classroom at Fulton Science Academy and on the gymnastics mat for Amplitude Gymnastics Academy in Roswell.
“I’m super-proud of Aaron. He’s done a tremendous job this year,” his mother said during an interview with the two of them during a rare break in a schedule packed with extracurricular activities and bar mitzvah preparations.
Things began to turn around for Aaron about six years ago. His doctors — his primary physician is a fellow Beth Shalom member, Jay Hochman — put him on a biologic called Remicade, which is delivered by IV every six weeks. He got involved with the Crohn’s & Colitis Foundation, starting with attendance at a Take Steps walk to support the team sponsored by the center where he gets his Remicade infusions. And he went to Camp Oasis, a six-day camp for children with Crohn’s or colitis, held at Camp Twin Lakes’ Winder facility.
The Remicade infusions force Aaron to miss school one day every six weeks and are likely to cost him the last day of camp in June. The drug suppresses his immune system, so he’s susceptible to the flu even after getting the annual shot and sometimes must miss gymnastics practice to avoid exposing teammates to the skin infections that are easy to develop in a sport in which ripped-open hands are a badge of honor.
Once, his mother said, Aaron needed a traveling pharmacy with him and had supplies of narcotics at school. But since getting off nausea-inducing methotrexate about six months ago, he now takes only one pill twice a day, the probiotic VSL#3, along with calcium gummies because he can’t have dairy products (his digestive system can’t handle milk protein).
The involvement with the foundation and the walk proved beneficial for Aaron and his father, who not only got his office involved in sponsoring a Take Steps team, but also became the president of the foundation’s Georgia Chapter.
“There’s just so much spirit,” Aaron said about Take Steps, which covers 1.5 to 2 miles. “They’re all trying to do the best they can to raise as much money as possible.”
He has raised at least $2,000 each year. He has brought in $2,883 this year toward a team goal of $6,000.
His father joined another foundation project, Team Challenge, and successfully trained for a half-marathon, twice the distance of the 10K Peachtree Road Race he runs each year, now accompanied by his father and son. Mike Weinberg’s Team Challenge participation led to Aaron speaking as an honored hero at a marathon and celebration in New Orleans in 2016.
Aaron speaks at schools and businesses each year before Take Steps, although this year his only promotional speech was at Beth Shalom during services May 13.
Some of the credit for his confidence to speak about his disease stems from Camp Oasis.
His mother saw a dramatic difference in Aaron when they were driving home from the camp after his first session. They stopped for lunch at a place that had a little toy to put together. “I was going to help him put it together, and he looked at me and was like, ‘Mom, I can do this.’ It sounds really kind of silly, but you just saw this self-confidence that hadn’t been there before, and that’s continued as they’ve talked about the issues, as they teach them skills to cope with whatever challenges they’re facing.”
Aaron said it’s special to spend a week where everyone understands any problems with your disease.
“It’s definitely a heartwarming place for everyone that goes there because having Crohn’s or colitis, you kind of just feel left out of some things, especially if you have to use the bathroom and you’re gone for a bit longer than usual,” he said.
The bathroom can be an issue while he trains for gymnastics, which he began about four years ago. But Aaron said if he misses something, he asks the coach what he can do at home to make up for it.
It must be working because Aaron finished first in his division at a regional USA Gymnastics competition in Daytona Beach, Fla., on April 21.
He said he consistently gets 10s in his best event, the rings, and does well on the vault. As for his goals in the sport, “I just want to keep going as long as I can.”
After all the serious issues Aaron has overcome to achieve athletic success and to mark his Jewish adulthood by chanting from the Torah portion Bamidbar, he takes minor setbacks such as skin infections in stride, his mother said.
“I always feel like I’m waiting for the other shoe to drop, for the Remicade to stop working or whatever, but he’s doing great,” she said. “It’s easy to forget right now that he has anything wrong with him.”