In 2022, after months of unexplained weight loss, fatigue, and gastrointestinal symptoms, Soleil Levy was diagnosed with Crohn’s disease, a type of inflammatory bowel disease (IBD). Now nine years old, the Harrington Elementary third-grader is using her voice to raise awareness and funds for research, as she prepares to speak at the Crohn’s and Colitis Foundation’s annual walk in June.
“I’m incredibly proud of Soleil because this [honor] really brings to life how she has been living her life,” said Rachel Levy, Soleil’s mother. “She is the most resilient nine-year-old I’ve ever met.”
Soleil’s journey began when she was just six. While living in New York City, she stopped eating and became increasingly tired. After developing a fever that wouldn’t go away in June, her pediatrician ordered urgent testing. The results came back quickly—and alarmingly.
“As soon as [her tests] came back, I got a phone call from her pediatrician in New York City who said, ‘Your next phone call is going to be from the hospital. You need to take that phone call, and you need to take Soleil to the hospital. She’s very sick,’” Levy recalled.
Within two weeks, Soleil underwent a colonoscopy and endoscopy. Her inflammation levels were off the charts. The doctors rushed her into formal imaging and were finally able to diagnose her with Crohn’s disease mere weeks before the family moved to Lexington.
“I felt like we were really getting amazing care,” Levy said. “But the level of attention Soleil was getting… scared me. Because I knew a stable patient wasn’t going to get a phone call from the doctor at 10:30 p.m.”
After the move, Soleil was hospitalized again—this time at Boston Children’s Hospital—with pancreatitis. Her doctors quickly pivoted to a new long-term treatment plan, involving two years of infusion therapy.
In Lexington, the family joined the New England Chapter of the Crohn’s and Colitis Foundation. Since then, they have been active in galas, fundraisers, and community talks aimed at supporting the foundation’s mission. The nonprofit, which serves 130,000 IBD patients in the region, has been involved in every major research breakthrough in the field.
At this year’s walk—attended by more than 1,500 people—Soleil will be the featured pediatric speaker.
“There’s usually one pediatric patient. When Soleil heard [the child speaker during her first walk], she turned to me and said ‘Mommy, when can I tell my story?’” Levy said.
Her biggest goal is to raise $25,000 for the foundation, with all funds supporting research and advocacy.
“She doesn’t just want new and better treatments—she wants a cure,” Levy said. “She wants to live a life without Crohn’s. And she knows that today, that’s not possible.”
Beyond raising money, Soleil and her family hope to spread awareness about what it means to live with a chronic, invisible illness.
“For me, it’s been a real reminder of ‘you have no idea what’s going on with someone,’” Levy said. “So it’s a reminder to be tolerant and understanding of other people.”
Levy praised the Lexington Public Schools curriculum for teaching students about inclusion and differences among peers.
“It’s a great opportunity for kids to be exposed to differences between people,” she said.
World IBD Day is on May 19. Soleil and her family encourage the community to learn more, get involved in the walk, and donate if they can.
“She doesn’t miss a beat,” Levy said. “And she’s not stopping anytime soon.”