OUR CHAMPIONS

When Charlotte was just 2 years old, she was referred to CHOP for “failure to thrive.” Renee, Charlotte’s mom, remembers feeling heartbroken, because she felt that this diagnosis really meant “failure to mom.” Dr. Verma in the Celiac Center reassured her that she was a great mom; Charlotte was just dealing with a disease that wouldn’t let her properly digest gluten. Now, at age 7, Charlotte is thriving and letting her personality shine. She loves to do art projects, play with her sister, Taylor, and help decorate for every holiday. When asked about her favorite thing about CHOP, Charlotte said, “seeing all the doctors! Everybody at chop is the best person in the world.”

At the age of 8, Tara was diagnosed with idiopathic scoliosis. By 13, she required spinal fusion surgery. Six months after surgery, she was back on the basketball court. But over time, she started to experience pain. She reached out to Dr. Sankar, who performed her surgery, in the summer of 2020 to see what could be done. “I was no longer technically a pediatric patient. I expected Dr. Sankar to refer me to a colleague, but Dr. Sankar, and his team, welcomed me back in with open arms.” Dr. Sankar removed Tara’s rods and screws in the winter of 2020, and she’s been pain-free ever since. She’s currently in her second year of law school at Villanova University. “CHOP is the reason that I’ve gotten to where I am today and achieved every dream that I’ve had along the way.”

Nicole was just expecting to find out the sex of her baby; her ultrasound showed more than that. Little baby Marisa was diagnosed in utero with congenital cystic adenomatoid malformation, choroid plexus cysts, and traces of trisomy 20. Nicole was referred to CHOP and immediately felt at ease. “Before we officially met to go over test results, Dr. Peranteau popped into our room and just said ‘Hi I’m Bill; everything is going to be ok.’” And it was. Marisa is now an outgoing, funny and caring 6-year-old. She’s learning to read and play the piano. Nicole says, “CHOP gave us hope when we felt hopeless. Marisa is here and thriving because of them.”

Taylor comes to CHOP for multiple diagnoses, including Lyme disease, C. diff, gluten sensitivity, and others. Taylor’s sister Charlotte, another 31-Day Challenge Champion, also comes to CHOP for her celiac disease. Renee, the girls’ mother, says that she appreciates that CHOP, “went out of their way to give Charlotte and Taylor the same treatment team so that we were comfortable.” Taylor is living life to the fullest, cheerleading for youth football, learning gymnastics, and even advocating for others with dietary restrictions.

Jax was diagnosed with celiac disease at age 5. As he learned to read, Jax started with fairy tales and food labels. The only treatment for celiac is a strict gluten-free diet for life. Unlike some other food allergies, Jax cannot outgrow celiac, and there is no rescue medicine to take in the event of accidental gluten ingestion. Along with his family and CHOP doctors, Jax is working to increase federal and state funding for celiac research to find a treatment other than a gluten-free diet. Jax has raised $100,000 for CHOP through the Commonwealth of Pennsylvania. Jax has also talked food policy with President Biden and was invited to make his case to the White House Domestic Policy Council and senior FDA leaders to label gluten as a Major Food Allergen on all packaged foods in the US, just like it is in 85 countries worldwide. This young lobbyist still makes time to be a kid, too. Jax loves pizza, playing soccer and tennis, going skiing, collecting baseball cards and listening to Taylor Swift.

Cassidy is a silly, affectionate and strong kid who, at 3 years old, was diagnosed with high-risk neuroblastoma and referred to CHOP. She spent 115 nights in the hospital over the course of her treatment. Her mother, Katie, recalls the impact of every member of her CHOP team. “I will never forget the day following her second stem cell transplant. After many failed attempts to get Cassidy to sit up, the music therapist came in. She sat right up while he played.” Today, Cassidy loves soccer and spending time with her family and dog

Evan’s first surgery to correct his spina bifida happened in utero. His second came at 3 months old. Today, this fun-loving 7-year-old doesn’t let his condition get in his way. He runs 11-minute miles. He plays baseball and basketball. He and his dad love to cheer on their beloved Eagles. Evan enjoys science experiments and playing with his dog. His mother, Taryn, is grateful for the team at CHOP, and says, “They were there to say, ‘We can help,’ and did so with such grace and kindness.”

Newborn screening revealed that Jaxson, 2, had cystic fibrosis, and he’s been followed ever since by CHOP’s Cystic Fibrosis Center. Managing his condition includes frequent chest physical therapy and a strict diet. He was later diagnosed with autism spectrum disorder. His mother, Christina, praises his care team’s diligence: “Because of CHOP’s rigorous care, Jaxson was able to be diagnosed and treated at the most crucial time in his early development.”

In 2015, Liza, then 19, had a seizure. After a series of tests, she was referred to CHOP, where she was diagnosed with a brain tumor embedded deep within the back lobe of her brain. The tumor was removed in 2016. She appreciates her care team and notes, “They made me laugh and helped me to be up and walking two hours after surgery. I am not sure what my life would look like if I didn’t receive my care there.” Today, Liza enjoys spending time with her two sisters and lives life to the fullest.

When Brian was born, doctors couldn’t figure out what was making him so sick. After coding twice and being resuscitated by his mother, Brian was transferred to CHOP where specialists correctly diagnosed his rare endocrine system disorder and began treatment to manage his symptoms. Brian’s family credits CHOP for saving his life. Today, 3-year-old Brian sees several specialists at CHOP and visits more than 15 times a year for regular appointments.

From the moment Charlie was born, he had trouble breathing. His family turned to CHOP’s Newborn and Infant Chronic Lung Disease Program for answers. With the program’s specialized care and coordinated approach, Charlie grew strong enough to finally go home. Today, the 2½-year-old is thriving.

Diagnosed with spinal muscular atrophy at a year old, Claire didn’t have the strength to speak or feed herself. With the help of a breakthrough drug, physical therapy and her healthcare team at CHOP, she can now crawl, stand and walk – and is gaining strength each day.

Born with serious heart defects and a rare craniofacial condition, 15-year-old Emily has endured more than 30 surgeries in her life. Through it all, she has tried to remain positive, keep fighting and teach kindness. Last year, she and her 31-Day Challenge team, Merrill Crew, completed 3,026 miles to support kids at CHOP!

Gabriel was a mere 1.9 pounds when he was born 13 weeks early. His prematurity left him with cerebral palsy — and gave him a second family at CHOP. For 18 years, Gabriel has benefited from the multidisciplinary Cerebral Palsy Clinic. “They ask us what we think the goals should be and pull together a care plan that’s best for Gabe,” says his mother, Savine, who appreciates CHOP’s family-focused, personalized, comprehensive and convenient care.

When Johanna was being treated for leukemia at CHOP, her mom noticed massage therapy was offered to kids as they waited, and it seemed to calm them. Now that Johanna, 9, is in remission, she and her mom are working to help other patients get the same benefits from integrative health practices like massage.

Joey was born with multiple disabling and rare genetic conditions that impacted every aspect of his life. Overwhelmed, confused and scared, his family brought him to CHOP and discovered a level of support and hope they didn’t know existed. “In a world that seemed to present our son with closed doors and dead ends, CHOP opened those doors and guided us down the right path,” says his mom Laura.

Logan and his twin sister, Riley, were born prematurely. Riley went home first, but Logan, at 1.5 pounds, had multiple issues, including chronic lung disease. He was transferred to CHOP, where he was treated for several months. During follow-up visits, “We always hope to run into therapy pups and enjoy stopping by the Seacrest Studios to see what fun art project or show they are hosting,” says his mother, Becca. Today Logan, 4, and his family live in Hawaii, and he loves swimming and playing with his twin.

Sienna, 9, loves softball, piano, singing, acting and hanging out with friends. These days, she enjoys spending time virtually with friends playing Roblox. She has encopresis, a gastrointestinal motility disorder. With medical and behavioral therapy at CHOP, including biofeedback, “We have come so far,” says her mother, Jess, “making her happier, healthier and more confident.” When she’s at CHOP, Sienna loves to choose from the cafeteria’s sushi selection.

Diagnosed with Tetralogy of Fallot before he was even born, Owen was carefully monitored at CHOP. At five months old, he received heart surgery and recovered quickly. But when he was 2 years old, Owen contracted RSV and needed further care from the Cardiac Center at CHOP. Today, Owen is an active and personable 4-year-old with boundless energy.

When he was 2, Will was diagnosed with a rare neurodegenerative mitochondrial disease called Leigh syndrome. “Since there is no treatment, it is imperative that he be followed by experts,” says his mother, Kasey. The Texas-based family travels to CHOP, where Will’s symptoms get assessed and he participates in research studies. Now 9, he loves football, basketball and hockey and plays on the Miracle League baseball team.