Ambassadors

Avery’s Story

Avery is a spunky preteen who was sidelined with pain from IBD that prevented her from participating in her daily activities and being her silly self. Once her IBD was identified and she began infusion treatments, she blossomed. She was finally able to attend an overnight summer camp with her friends – a milestone for the 11-year-old. When Avery grows up, she hopes to become an interior designer and kick some butt on the tennis court! She, her younger sister Blake, 8, and the rest of her family are excited to participate in Walk for Hope this year to support other children and teens with IBD.

Berklee’s Story

As the middle of five children in her family, Berklee can fit into any group. She can be outgoing or reserved, silly or serious, assertive or laidback. When she turned 8, Berklee began experiencing severe stomach pain. After a doctor’s visit, a trip to her local ER, and an ambulance ride to CHOP – where dozens of tests were performed – Berklee was diagnosed with indeterminate colitis, a form of IBD. She was treated with a short course of antibiotics and began infliximab infusions. Today, 14-year-old Berklee is feeling great, playing sports and recently celebrated the 2-year anniversary of her vegan homemade baking business, Berk’s Bakery.

Caley’s Story

At 18 months old, Caley accompanied her newborn brother on his first visit to the pediatrician. The visit took an unexpected turn when the pediatrician noticed that Caley seemed unwell. A quick listen to her heart revealed a heart murmur, and she was sent to a local hospital where she immediately received a blood transfusion. After nearly two years of enduring various tests and treatments and experiencing seemingly unrelated symptoms – ankle swelling, anemia and transient GI symptoms, Caley still didn’t have an official diagnosis. A chance encounter with a relative – who is a gastroenterologist at CHOP — lead Caley’s family to CHOP’s Very Early Onset IBD Program. The team navigated many challenges at the height of the COVID-19 pandemic to run a battery of tests on Caley to diagnose her with VEO-IBD and begin treatment. Now 5, Caley is a sassy and persistent kindergartener who is eager to learn new things, loves swimming and recently earned her purple belt in karate. The family travels from Queens, NY, for appointments and is thankful to the VEO-IBD team for Caley’s health – she’s now in remission – and for always making appointments as seamless and efficient as possible.

Christian’s Story

Meeting this energetic, determined and yes, sometimes bossy, 5-year-old, you’d never know what he’s endured and overcome in his young life. Diagnosed with very early onset IBD a month after his second birthday, Christian has seen multiple doctors in numerous hospitals since his symptoms began. He’s had four colonoscopies, one inpatient stay and countless sleepless nights as doctors searched for the right medication to treat his distinctive VEO-IBD symptoms. With hopes to grow up to a super strong superhero, he and his family are participating in Walk for Hope this year under “Team Bubbado” to raise awareness, support and fundraising for Crohn’s disease, colitis and IBD.

Gavin’s Story

If Gavin could have any superpower he would heal all sickness in the world. This caring and loving boy was just 7 years old when he began to experience alarming symptoms: bloody stools and severe belly pain. He was a frequent visitor to the Emergency Department until doctors discovered he had ulcerative colitis, and he began treatment. After the initial medication failed, Gavin was admitted to the hospital and additionally diagnosed with pancreatitis and prescribed Remicade. Within 24 hours, he was feeling better and discharged. Now 9, Gavin plays on a travel baseball team, gets straight A’s in school and continues to return to CHOP every 6 weeks for infusions. Gavin says he’s participating in Walk for Hope to “help kids like me by raising awareness and money for a cure to IBD.”

Leo’s Story

At 3 years old, Leo has a huge imagination that he uses to entertain his twin brother, Tommy, and older brother, Charlie, who are his best friends. Both Leo and Tommy were diagnosed with VEO-IBD in early 2022, but Leo has had a “rough go with his disease,” says his mom, Liz. He was in and out of the hospital for much of 2022 as he struggled with his disease, caught pneumonia, and underwent a series of surgeries to improve his health. Doctors struggled to find the right medication to quiet his symptoms. Today, Leo has been stable for four months and is about to return to daycare. “Leo is the textbook case of why VEO-IBD is so tough and why we want to raise awareness and money for more research to help kids like him,” Liz says.

Ronald’s Story

As a high school senior, Ron is focused on what’s ahead of him – graduation and college. But he also knows what he’s endured and accomplished that have led to this moment. After finding blood in his stool and being diagnosed with IBD as a young teen, Ron was forced to re-examine his health. With the help of his IBD team at CHOP, Ron began treatment and has achieved remission. He’s participating in Walk for Hope to help find a cure for IBD – for himself and other kids. Now 18, Ron is a state track champion, a National Honor Society member and has been accepted to 15 universities so far. He hopes to become an entrepreneur and join a finance or accounting firm.

Royce’s Story

Royce is a charismatic, sweet and funny boy whose symptoms began in the summer of 2021 when he was just 3 years old. After multiple office visits to other facilities, Royce’s family decided to take him to Children’s Hospital of Philadelphia (CHOP) where they admitted Royce for nine days to monitor his symptoms, weight and levels. After multiple tests, Royce was diagnosed with Crohn’s disease and is now on a regimen of infusions every three weeks to help decrease his inflammation and increase his red blood count, iron and weight. Today, this silly 5-year-old is full of life and encourages himself through infusions by telling himself “you got this” and explains he needs his blood draws to help fight vampires because he has werewolves’ blood. He looks forward to coming to CHOP because he loves the attention he receives from the nurses … so much so that he wanted them all to come on his family vacation to Disney World last summer! When he’s older, he aspires to become a police officer and catch “bad guys.”

Tommy’s Story

Three-year-old Tommy is an energetic, independent and silly boy who loves mermaids and the color red. Like his twin, Leo, Tommy was diagnosed with VEO-IBD in early 2022, but Tommy’s symptoms were much less severe and his disease course more predictable. Tommy responded to initial treatments, while Leo did not. In fact, it wasn’t until a bout with COVID-19 last summer that Tommy required hospitalization. Within six days of being admitted, Tommy started to go into remission and has been doing great since then. Tommy loves to go to the park, swimming with his brothers, wresting with his dad and dancing with his mom.

Wilhelmina’s Story

When Wilhelmina was diagnosed with VEO-IBD at age 4, her parents were unsure how it would affect her everyday life or their family’s. They were referred to CHOP’s VEO-IBD Program, one of only two such specialized programs for very young children with IBD in the country. Wilhelmina’s doctor reassured her family: having IBD won’t stop her from doing anything she wants to do. Today, 9-year-old Wilhelmina is swimming competitively, doing well in school and hopes to become a doctor one day to help other kids with IBD. She and her family are participating in Walk for Hope to support IBD research, meet families with similar experiences and find a cure for IBD.

Brayden’s Story

When 9-year-old Brayden experienced uncomfortable GI symptoms during a championship football game, his parents initially chalked it up to nerves. Weeks later tender, red bumps appeared on his legs. Local doctors could not identify the cause or offer any relief. The family turned to Children’s Hospital of Philadelphia (CHOP) for answers. Clinicians at CHOP immediately recognized the rare, inflammatory skin disorder which is often associated with inflammatory bowel disease (IBD). Further testing confirmed Brayden had Crohn’s disease, a type of IBD. Soon after, he began treatment with Remicade® (infliximab), one of the few FDA-approved medications for pediatric patients with stubborn or irretractable IBD, and his symptoms are improving. He’s excited to participate in Walk for Hope to let other kids with IBD know that “a cure is possible if we all work together.”

Michael’s Story

At 13 years old, Michael has a lot going for him: he’s smart, athletic and artistic. Diagnosed with inflammatory bowel disease (IBD) at age 5, Michael’s condition has been successfully controlled with oral medication and dietary modifications for 8 years – a milestone he recently celebrated. With the encouragement of his family, Michael has been actively involved in his own medical care since he was young. Michael is part of his school’s gifted and talented program, has achieved honor roll every marking period since fifth grade and loves to play football, baseball and basketball. He’s also very curious, says his mom Maria, “Sometimes, he breaks things just so he can try to fix it!” Michael hopes to pursue a career as an architect or graphic artist to allow him to remain creative as an adult. He and his family are participating in Walk for Hope to “find a cure for IBD and make sure all kids with IBD can just be kids.”

Samantha’s Story

The past year has been a whirlwind of emotions, doctor’s visits and diagnostic tests for Samantha, 11, and her family. A dramatic change in the girl’s usually sweet and optimistic mood and behavior – combined with sudden weight loss – prompted a visit to the pediatrician. When Samantha developed a fistula on her bottom, doctors referred her to CHOP’s Division of Gastroenterology, Hepatology and Nutrition for further evaluation. Tests revealed the cause of Samantha’s recent health and related mood changes were due to Crohn’s disease, a form of inflammatory bowel disease (IBD). Doctors placed a seton – a piece of surgical thread to keep the fistula open so it could properly drain and heal – and recently removed it. Samantha’s mom, Kimberly, has been impressed with care her oldest daughter has received at CHOP. “Everyone at CHOP has been wonderful! I love that they talk to Samantha and treat her as her own person rather than communicating through me.”

Sophia’s Story

After years of donating teddy bears for young patients at Children’s Hospital of Philadelphia (CHOP), 15-year-old Sophia unexpectantly found herself hospitalized there. In the months before her hospitalization, Sophia experienced an odd assortment of health maladies: an injured wrist, a sprained ankle, thigh pain and, frequent bathroom urgency. When she started bleeding unexpectedly, her family brought her to the hospital. After a series of tests, she was diagnosed with inflammatory bowel disease and was experiencing her first severe flare. She was hospitalized for a total of 7 weeks before an effective treatment was found. Today, thanks to the “amazing care at CHOP and the medications that gave her life some normalcy, Sophia has been doing so well,” says her mother, Amy. Sophia’s experience at CHOP has inspired her to share her experience, to bring awareness of IBD and raise funds for research. It’s also sparked a potential career: pediatric nursing.

Teagan’s Story

Growing up, Teagan was one the tallest of her friends, but when the 11-year-old hadn’t grown in two years –and lost weight at the same time – her family and doctors grew concerned. After a battery of tests including blood work, physical exams and endoscopies, gastroenterologists at Children’s Hospital of Philadelphia diagnosed Teagan with inflammatory bowel disease (IBD). She recently started taking a new medication to better manage her IBD symptoms. The medication makes her nauseous, but she doesn’t complain. Instead, Melanie says her daughter “has handled her entire IBD experience with poise and determination.” Despite her health challenges, Teagan remains the same friendly, conscientious and determined girl who is always willing to help a friend, stand up for what she believes in and fight injustice. “We are participating in Walk for Hope so Teagan can make a difference and raise funds for IBD research,” Melanie says.

Tim’s Story

Tim’s always been an active kid. Friendly and outgoing, he loves all sports – both as a participant and a spectator. When bowel issues threatened his adventurous lifestyle, his mom Catherine talked to Tim’s pediatrician, who recommended a consultation with a gastroenterologist at Children’s Hospital of Philadelphia. Testing confirmed what doctors suspected: Tim had inflammatory bowel disease (IBD). The news sent Tim’s close-knit family into a tailspin. His mom and older brother worried about him, but quickly shifted to help Tim find humor wherever he could find it. Of course, with two teen boys, that often led to poop jokes. “Timmy did an amazing job learning how to deal with his new reality,” says Catherine. “Thankfully, his medicine has allowed him to return to his normal life.” With his IBD under control, 15-year-old Tim has returned to competitive soccer and wrestling, and hopes to continue both into college or trade school.

Titus’s Story

After months of severe pain and massive weight loss, 7-year-old Titus was admitted to Children’s Hospital of Philadelphia on Christmas Day of 2015. It was not how anyone wanted to spend holiday season, but after multiple tests his family finally had an answer: He had Crohn’s disease, a form of inflammatory bowel disease (IBD). During that week in the hospital, Titus was given his first round of Remicade® (infliximab), one of the few FDA-approved medications for pediatric patients with stubborn IBD. Since then, Titus has continued regular infusions of the medication every seven weeks and, only experienced mild symptoms. Now 13, Titus has grown taller and stronger, and “eats everything in sight,” says his mom, Maygan. Because his infusions can be uncomfortable, Titus’s family times his infusions around breakfast at the CHOP cafeteria, where he loves the star tater tots. He’s excited to participate in Walk for Hope to raise awareness of Crohn’s disease and help support the hospital and people who have cared for him the past 6 years.

Vedant’s Story

Vedant is an outgoing and fun-loving preteen who enjoys creating art and playing with his friends. His family brought him to Children’s Hospital of Philadelphia seeking a second opinion about ongoing gastrointestinal issues. At CHOP, Verdant was diagnosed with inflammatory bowel disease and began treatment. “We are participating in Walk for Hope to encourage other families and children to be motivated to take control of their health and share their experiences,” says Anu, Vedant’s mom. Since Vedant’s inpatient stay at CHOP, his health has dramatically improved. He loves to be active, ride his bike around his neighborhood and practice martial arts. Recently, he earned a first-degree black sash in Kung Fu. While Vedant’s future career path is uncertain – he’s not even in high school yet – he is considering the medical field. “He’s mentioned a couple times that he wants to become a doctor to help others have better health,” Anu says.

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.

Paige’s Story

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.

Ronnie’s Story

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’s Story

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.

Sofia’s Story

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.

Thomas’ 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.”

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.