In summer 2018, after a year of increasing blood in her stool, Abby lost 20-plus pounds and became anemic. Because she always needed a bathroom nearby, she avoided traveling in a car for any extended period. The typical anxieties that come with starting high school were heightened because of her health issues. The family turned to CHOP. Now, regular biologic infusions control her ulcerative colitis symptoms. “There are plans for a trip this summer to Colorado or Oregon,” reports her mother, Jen. “The CHOP doctors brought ‘normalcy’ back to Abby and our family. There are no words to accurately capture our gratitude.”
When Brandon was 6, severe stomach pains, frequent trips to the bathroom, weight loss and fatigue overtook his life. “At the time, Brandon had no energy to do anything, especially play the sports he loved,” say his parents, Shannon and Shawn. After being diagnosed at CHOP with Crohn’s disease, he went through what Shannon calls “a year of medicine trials,” trying four different treatments before landing on a combination that controlled his symptoms. Now 11, he’s full of energy, and his family is thrilled to help raise funds to find a cure for IBD.
Charlotte has had stomach issues all her life, but when she was 7, bellyaches, frequent bathroom trips and joint pains left her “not wanting to do anything but sleep,” says her mother, Jennifer. Food made her feel terrible. After a Crohn’s disease diagnosis at CHOP, her symptoms are kept under control by biologic infusions. She’s now having fun with her siblings and dog, playing basketball and enjoying fourth grade. “Charlotte felt very alone when she learned she had Crohn’s disease,” says Jennifer. “She didn’t know any other children her age that suffered from IBD.” As a Walk for Hope Ambassador, she’s happy to share her story and give hope to other kids like her.
When 7-year-old Ellie began having diarrhea and feeling lethargic in summer 2018, her personality underwent a huge shift: She went from happy-go-lucky to troubled, sad and worried. At CHOP, biologic infusions have gotten her physical symptoms under control, and the child life specialists tend to her emotional needs. “They build Ellie’s bravery beads necklace at every visit,” explains her father, Scott, who also has Crohn’s disease — which is why the family wants to do everything they can to find new IBD treatment options and, ultimately, a cure.
Emmy’s severe symptoms — which appeared when she was 8 — made her very sick, and her life was essentially on hold for several months, during which time she missed a lot of school. After a Crohn’s disease diagnosis, Emmy started on oral steroids and then transitioned to biologic infusions, which she receives every seven weeks. She’s now fully enjoying her favorite activities, singing and acting — she even landed the lead part in her school’s production of Cinderella. “Emmy is very passionate about educating others about IBD, and she is an amazing advocate for herself,” explains her mother, Tiffany, with pride.
Louise’s symptoms began when she was 13, and they weren’t typical. Instead of weight loss or diarrhea, she got an extremely high and persistent fever. At different points, pancreas problems, celiac disease and stomach ulcers were all suspects. After a year of inconclusive tests, a colonoscopy at CHOP led to a Crohn’s disease diagnosis. Infusions of a synthetic antibody and low doses of the anti-inflammatory drug methotrexate keep her symptoms under control, so this honors student can maintain her busy schedule that includes robotics club, chess club, jewelry-making and more.
Luca’s family tends to eat a natural diet, so when he began complaining of stomach pains after he started middle school, his mother Gina assumed the less-healthy foods at school were to blame. Then Luca began losing significant weight. Within months, a colonoscopy led to a diagnosis of Crohn’s disease. “Everything happened so quickly,” Gina says, which felt overwhelming, but ultimately for the better, considering how for some children, a diagnosis remains elusive for years. Now 12, Luca follows a nutritional therapy routine that leans heavily on protein smoothies and organic, unprocessed foods.
In September 2018, Natalia’s severe abdominal pain and lack of energy led to numerous visits to the family’s local emergency department. A month later she was at CHOP, where doctors diagnosed her with Crohn’s disease. While infusions of antibody helped control her symptoms, she continued to experience flare-ups, leading to surgery that removed a damaged section of her intestine. Now full of energy, 15-year-old Natalia loves all types of dancing, participates in the debate team, and is determined to pursue a career as a corporate lawyer.
Over time, Rubin began experience increasing lethargy, weight loss and physical discomfort. Once he received his IBD diagnosis at age 9, he immediately saw the results of managing his condition. “He didn’t miss a beat,” says his mother, Christine. “He didn’t miss any school or complain.” These days, Rubin, now 11, is feeling healthier than ever and excels at cross country and 5K races. He’s committed to healthy eating and a meatless diet. His oral medications likely won’t control his symptoms in the long-term, so his care team is working on escalating his therapy to IV infusions. Rubin’s outlook remains positive and strong.
Six-year-old Savannah has already endured a great deal. Bloody bowel movements and a distended stomach landed her in the hospital, where tests pointed to IBD. Savannah came to CHOP’s Very Early Onset IBD Program for young children, who sometimes do not respond to traditional treatments. Savannah has needed extended inpatient stays, a feeding tube, steroids, blood transfusions, iron infusions, and a surgical procedure to divert digestive waste away from the lower intestines to an external collection bag. Today, she lights up a room and is eager to show off her cheerleading skills.