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!
Anna’s Story
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’s Story
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.”
Emily’s Story
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.
Thomas’s Story
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.”
- 2020 Ambassadors
Abby’s Story
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.”
Brandon’s Story
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’s Story
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.
Ellie’s Story
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 Story
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 Story
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 Story
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.
Natalia’s Story
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.
Rubin’s Story
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.
Savannah’s Story
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.
- 2019 Ambassadors
Brandon
Brandon’s mom jokes that he’ll grow up to be either an actor or a scientist. Whatever he ends up doing, his parents are overjoyed to see their son happy and engaged after struggling with IBD.
Clarice
Clarice, 17, shares her story with others to remove the stigma surrounding inflammatory bowel disease (IBD).
Eddie
After an arduous journey to find an IBD treatment that worked long-term and didn’t give him unacceptable side effects, Eddie is able to focus on practicing his basketball technique.
Fiona
Fiona keeps her IBD symptoms under control through nutritional therapy. She’s now enjoying her favorite hobbies and thinking of turning her love of animals into a career.
Garrett
After his IBD diagnosis, Garrett couldn’t be far from a bathroom after eating. Now, he eats nonstop – his favorite food is chocolate and vanilla swirl ice cream.
Katie
IBD used to keep Katie sidelined from her beloved dance lessons. After treatment at CHOP, Katie is energetically dancing again.
Kaylen
Kaylen went through episodes when she would double over from stomachs pains. Now she’s back to her favorite activities, including soccer and baking.
Kyle
Kyle’s Crohn’s disease used to keep him sidelined from his favorite passion – soccer. A new medication has him back in action.
Lacey
Severe stomach pain brought Lacey to CHOP’s Emergency Department, where a doctor finally recognized her symptoms as IBD. She’s now a strong advocate for the need for more research.
Max
As a very independent kid and “a big ham,” 12-year-old Max isn’t letting his Crohn’s disease dampen his big personality.
- 2018 Ambassadors
Jillian
After treatment for Crohn’s disease, Jillian has resumed competitive dancing and hopes to pursue a career in nursing.
Landen
Diagnosed with very early onset inflammatory bowel disease (VEO-IBD) when he was only 18 months old, Landen is now responding well to treatment and is thriving.
Paige
After being diagnosed and treated for IBD, Paige is now growing, thriving and dancing competitively.
Sydney
With medication and nutritional therapy at CHOP, Sydney has transformed from a very sick toddler to a thriving pre-teen.
Ty
Surgery at CHOP gave Ty his first real relief from stomach pain since his Crohn’s disease started.
William
Finding the right combination treatment was key to helping William bounce back from his ulcerative colitis.
Zachary
Nutritional therapy proved to be the key to treating Zachary’s Crohn’s disease and eventual remission.
