Our inspiring patients are the reason Walk for Hope was created and why we continue to strive to create breakthroughs for every child in our care. All donations to Walk for Hope power inflammatory bowel disease research and care at Children’s Hospital of Philadelphia (CHOP). Thank you!
Before being diagnosed with very-early-onset IBD, Anna went through a rough time: diarrhea, stomach pain, fatigue and leg pain so bad, she needed to be carried out of dance class or up the stairs. Because she wasn’t absorbing nutrients, her growth and weight curve flattened. Now, with biologic infusions and guidance from an IBD dietitian, 6-year-old Anna is growing and enjoying dance and soccer. “We strive to eat an anti-inflammatory diet with real foods and little to no processed and artificial foods,” explains her mother, Christina. “We are in a groove, and Anna is able to recognize what foods make her feel good and what doesn’t.”
Colby, 16, enjoys competing with others in car racing online and plans to be a mechanical engineer. But five years ago, he was plagued by diarrhea and fatigue and was severely underweight. “Our pediatrician suspected IBD right away, and it was confirmed a month later,” says his mother, Jeri. Colby has tried several combinations of medications to control his symptoms and has needed iron infusions — all of which was challenging at first “because he was scared of needles and could not swallow pills,” says Jeri. “Over time, he got over those fears.” The family travels from southern Maryland to receive care at CHOP: “We never leave there without having hope and confidence that things will get better.”
After a year of experiencing symptoms and then bloodwork results that showed dangerously low levels of hemoglobin, Emily was diagnosed with IBD when she was 17. Months later, she came to CHOP in the middle of a bad flare. “Missing school for six weeks during that admission was tough because it was my senior year of high school,” she says. Happily, she was discharged in time go to prom and graduation. After trying biologics and antibiotics, she underwent several surgeries. “They gave me such relief and significantly increased my quality of life,” she reports. Now 20, she’s at Penn State studying architectural engineering.
When Paige, 18, begins her studies this fall at Nebraska Wesleyan University, her professional goal has grown out of her personal experience with IBD. “My diagnosis has directed me to be a prehealth/biology major and then go to medical school to be a pediatric GI doctor,” says Paige. As a 10-year-old, she began losing weight and having joint pain so bad she could barely walk. Treatment by a doctor in Omaha got her into remission, but her family began coming to CHOP annually for evaluations and advice on staying healthy. She’s able to maintain an active lifestyle that will include playing on the college basketball team.
When Ronnie was 14, he began losing a lot of weight and vomiting frequently. Since Ronnie was already a CHOP patient for primary care, his family turned to the specialists at CHOP’s Center for Pediatric IBD. Within a few weeks, he was diagnosed with Crohn’s disease. Biologic infusions and a surgical procedure have gotten his symptoms under control. His mother, Veronica, appreciates her son’s care team: “They were always able to lift Ronnie’s spirits when he felt down — especially when they would tell him it was time to be discharged from his hospital stays!” Now 17, Ronnie enjoys playing basketball and his favorite subject is physics.
Sarah began experiencing IBD symptoms when she was 14. “We were fortunate that Sarah’s pediatrician was proactive and moved promptly to get her seen at CHOP,” says her mother, Debby. Along with multiple oral medications, Sarah’s initial treatment plan included frequent injections of an immunosuppressive drug, which she found difficult. Treatment adjustments reduced the number of injections. “From the onset of Sarah’s diagnosis, every doctor, nurse practitioner or nurse affiliated with CHOP was fantastic when it came to Sarah’s care,” says her father, Steve. Now 16, Sarah enjoys Irish dance, photography, painting, playing with her dog, Bailey, and listening to music.
Energetic and adventurous, 6-year-old Sofia is working on her back handspring at gymnastics class. But two years ago, she had terrible diarrhea, felt lethargic and wasn’t growing. At CHOP she was diagnosed with very-early-onset IBD. To control her symptoms, she receives medication at home and comes to CHOP every six weeks for biologic infusions — a day her parents always try to make special. CHOP’s child life experts help keep the experience positive. “They are amazing,” says her mother, Nicole. “They made her a ‘bravery bead string.’” At every infusion, Sofia picks a bead to add to her string. She currently has 22 beads.
Seven years ago, when Thomas was 4, he began using the bathroom more than 20 times a day. As IBD was thought to occur most often in older kids and adults, he first tried dietary changes. Then his family came to CHOP’s Very Early Onset IBD Program. With regular biologic infusions, his symptoms are manageable. “Thomas has had more than 100 infusions, and he completes each one with a positive attitude,” says his mother, Heather. “When the nurse inserts the needle, he never fusses.” By planning ahead, he’s leading a life without limitations: “He loves playing soccer, and he tries new sports like lacrosse and skiing with little thought about how his IBD will impact him.”