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Patient Stories

When Zohan was born, his parents were overjoyed to welcome their little boy into the world. But shortly after his birth, doctors noticed differences in his leg length and foot shape. After further testing, they diagnosed Zohan with fibular hemimelia, a condition where the fibula bone in the lower leg is missing or underdeveloped. From an early age, Zohan adapted to his condition, often running and walking on his toes. But as he grew, he faced challenges—difficulty wearing standard shoes, fatigue, and limitations in certain activities with his peers. His parents, determined to find the best care for him, were introduced to Nemours Children’s Hospital, Florida through their primary care provider. Their own research confirmed Nemours Children’s reputation for advanced limb reconstruction, and they knew they had found the right place. From their first visit, Zohan’s family felt reassured by Dr. Jason Malone, Dr. Shawn Standard, and the entire care […]

Aiden was tall, strong and active, and his weight was only slightly above expected for his age. His family had no cause for concern until he developed severe, unexplained abdominal pain at the age of 10. After multiple checkups and tests, Aiden was diagnosed with a metabolic liver condition. As part of his treatment, he enrolled at the Healthy Weight and Wellness Clinic at Nemours Children’s Hospital, Delaware, a multidisciplinary clinic dedicated to supporting and guiding families in helping children improve their health and well-being. Now 13, he is proud of the lifestyle changes he’s made working with the clinic. He’s increased his physical activity and added healthy foods to a balanced diet that still includes some teen favorites. “Now, I’ll snack on a salad, and I never thought I would do that,” he said. Aiden and his mother, Jennifer Downey, spoke at a December symposium titled “Obesity and Diabetes […]

When Piper was just a year old, her parents, Chris and Erin, noticed something unusual—she woke up one morning with a puffy face. Concerned, they took her to Nemours Children’s Hospital, Delaware, where doctors quickly determined there was a kidney issue. What followed was a long and complex journey to find the right diagnosis. After weeks of testing, Dr. Tapia identified Piper’s condition as Denys-Drash Syndrome—a rare and serious kidney disorder with only about 250 known cases worldwide. For the next seven months, Piper underwent treatment, but as her disease progressed, her family faced a difficult decision. To prevent the development of Wilms tumor—an almost certain outcome of Denys-Drash—it was decided Piper’s kidney would be removed under the care of Dr. Stephen Dunn. By December, she received a life-changing gift: a kidney transplant from her dad, Chris. “Dr. Dunn is a gift from God,” says Chris. “He gave our daughter […]

In October 2016, three-year-old Gabriella’s and her family’s world changed in an instant. She was diagnosed with rhabdomyosarcoma, a type of cancer that affects soft tissue. For her parents, Melissa and Shawn, time seemed to stand still. “So many emotions to describe that minute and the minutes, days, hours, weeks, months, and years since…” Melissa shares. But as they look back, their focus is on gratitude—on the people who stood beside them, the care that lifted them up, and the hope that carried them forward. Gabriella’s journey began under the care of Dr. Thacker, orthopedic surgeon at Nemours Children’s Hospital, Delaware. “We remember the words he spoke to us,” Melissa recalled. “But more importantly, we remember that his tone and demeanor were filled with sympathy, concern, and hope.” From the very beginning, Dr. Thacker was more than a physician—he was a constant source of support. Through chemotherapy, amputation, infections, and […]

10-year-old Briar is no stranger to adventure. An active and energetic boy, he loved riding his mini bike—until a life-changing accident on September 18, 2024, left him with serious injuries. While riding, Briar was hit by a car, suffering fractures to his leg, both hands, clavicle, and skull, as well as trauma to his leg and chest. He was stabilized at the scene and airlifted to Nemours Children’s Hospital, Delaware, where a team of experts was ready to provide the care he needed. Briar’s injuries required immediate attention. Upon arrival at Nemours Children’s, he was rushed into surgery to repair his leg and chest. His care team, including Dr. Duke (Trauma surgery), Dr. Trionfo (Orthopedic surgery), Bernadette Fulweiler, APN (Wound Care), and Dr. Haas (Rehab Medicine), worked together to ensure he had the best possible outcome. Katie, Briar’s mom, recalls the overwhelming emotions of that day. “When we landed at Nemours, I […]

At 19 years old, Zoey is pursuing her dream of becoming a hairstylist while managing a complex medical condition. For the past seven years, she has dealt with frequent bathroom trips, urinary retention, and persistent pelvic pain—challenges that have impacted her daily life. But through it all, she has found expert care and unwavering support at Nemours Children’s Health. Zoey’s symptoms began when she was just 13. She noticed she was using the restroom 15-30 times a day, with nights just as difficult. Despite constantly feeling like she needed to use the restroom, she was often unable to release urine. The discomfort affected her ability to focus in school, spend time with friends, and simply go about her day. “This condition has taken over the way I live,” Zoey shared. Zoey’s search for answers led her to Nemours Children’s Hospital, Florida, where she was connected with Dr. Hagerty, a urologist […]