Navigating Nail Patella Syndrome: Haven’s Story

Madison’s journey with Hemophagocytic Lymphohistiocytosis (HLH) began at 2 months old. A severe ear infection spiraled into Mastoiditis, leading to urgent surgery and a slew of testing. It was a challenging time for her mother, Jeannine, and their family. They grappled with the possibility of HLH, a blood and immune system disorder that had already touched their lives through Madison’s brother. Jeannine recounts, “Madison’s condition was weighing heavy on our minds that she could have HLH like her brother did.” Having sought care for her son at Nemours Children’s Hospital, Delaware, Jeannine turned to the hospital once again, entrusting them with Madison’s care. “We have always felt the doctors and therapists have cared for and loved us truly from their heart,” says Jeannine. “We went to larger hospitals and felt like we were a number there, but not at Nemours.” Madison’s treatment at Nemours Children’s primarily involves outpatient therapy services. […]

Jessica, 12-year-old Billy’s mother, recalls the summer of 2022 when they noticed something unusual during their family getaway. “While on vacation, we discovered he had an anal fistula,” she recounts. In April of the following year, Billy experienced his first flare-up, ultimately leading to a diagnosis of Crohn’s disease. Located in their hometown, Nemours Children’s Hospital, Florida became a regular visit for Jessica and Billy. “We have lived in Lake Nona for over 11 years,” says Jessica, so they were already familiar with the Nemours Children’s location. From the moment they stepped through the doors, they were greeted by a team of dedicated professionals led by gastroenterologist Dr. Pablo Palomo. Reflecting on their experiences with the Nemours team, Jessica highlights the genuine care and compassion in each interaction. “Billy’s liked everyone he’s ever interacted with,” says Jessica. “My favorite thing about them is how special they make me feel, even […]

For Conner and his family, the path to a Crohn’s disease diagnosis came unexpectedly. Conner, an active 11-year-old, was living life to the fullest until sudden symptoms disrupted his world. Stomach pain, rapid weight loss, and an inability to have a bowel movement led Conner to the emergency room. After initial treatment, he was transferred to a local hospital, where an endoscopy and colonoscopy in September 2023 confirmed the diagnosis of Crohn’s disease. Conner’s mom, Charity, shares that the abrupt change in her son’s health was unanticipated. “He was very active right up until about a week before he was hospitalized,” she shared, reflecting on how sudden the symptoms appeared. After diagnosis, Conner and his family were referred to Nemours Children’s Hospital, Florida, by their local physician. There, they found a team of specialists ready to support Conner through every step of his journey. Under the care of Dr. Palomo, […]