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Patient Stories

An exciting birthday party took an unexpected turn when a playful game of tag ended in a traumatic injury. During the celebration, 6-year-old Joey was bitten on the face by a dog, an incident that quickly changed the tone of the day. Thankfully, his parents didn’t have to think twice about where to turn. As longtime patients of Nemours Children’s, they took their son to the place they’ve trusted for years. “We instantly knew we were in the best of hands considering the situation we were facing,” shares Joey’s mom, Shae. “Joey was in incredible pain, and his right lip was in a horrible condition. We were unsure of the severity of his situation, but we knew Nemours would be able to help him and provide him with trusted care. This was proven true upon our arrival.” “The care offered to Joey and the whole family was immediate and genuine,” […]

At just 2 years old, Isabella was diagnosed with necrotizing fasciitis, a rare and life-threatening condition that began in her back and later spread to her right leg. The aggressive nature of the disease required intensive medical intervention. Physicians at multiple hospitals had to perform surgeries to remove infected muscle and tissue, a process that was both physically and emotionally taxing for Isabella and her family. Following the surgeries, Isabella was placed in a medically induced coma for two months to give her body the best chance to heal and fight off the infection. When she finally emerged from the coma, the next phase of her journey began. She was transferred to a third hospital, where she underwent physical rehabilitation and skin grafting to repair the extensive damage to her back and leg. Despite the challenges, Isabella’s resilience and determination shone through, and she made significant progress in her recovery. […]

At 15, Ella Wright had been battling painful headaches for years when she was eventually diagnosed with accommodative infacility. She went through months of eye therapy, and while her eyes began focusing correctly, the headaches still didn’t go away. That’s when her family returned to the doctor this time, they were referred to Nemours Children’s Health in Jacksonville, Florida. Before Nemours, Ella struggled with frequent, debilitating headaches. Her family described her as “relying on over-the-counter medication more than five days a week just to get through the day. After school, she’d go straight to bed, needing a dark, quiet room to cope with the pain.” The constant discomfort affected her mood, her energy, and her ability to enjoy daily life. We live in Georgia and weren’t familiar with Nemours,” her family said. “But everyone there has been wonderful. Dr. Janet Leon, Nemours pediatric neurologist, is outstanding—she’s a great listener, very […]

When Haven was born, her family quickly learned she was diagnosed with a rare genetic condition called nail patella syndrome, also known as Fong’s disease. She’s one of only about 50,000 people who have it. The condition, which can affect the development of bones, joints, and nails, made everyday life a challenge. Thanks to the expertise of Nemours Children’s Health, Jacksonville, and the specialized care of Dr. David Mandel, Haven’s journey has been one of resilience and progress. Haven’s family didn’t have to look far for exceptional care. Living nearby, they turned to the Nemours Children’s orthopedics team. Here, they not only found medical expertise, but a compassionate support system. “They have always been wonderful and have helped Haven throughout her whole journey,” says her mother, Kyla. Dr. Mandel, a leading expert in pediatric orthopedics, is skilled in complex procedures like Haven’s. She underwent two 4 in 1 quadricepsplasties, a […]

Born with Congenital Diaphragmatic Hernia (CDH) – a diaphragm condition that has led to asthma, gastroparesis, and scoliosis – 14-year-old Rylee has been in her fair share of doctor’s appointments. Through family moves and changing health systems, one thing has remained constant throughout Rylee’s care: Dr. Joseph Khoury. “We first met Dr. Khoury in Birmingham, AL,” shares Rylee’s mom, Allison. “We’ve followed him to different hospital locations for treatments with scoliosis from her birth defect. Her treatments started when she was 6 months old with Mehta castings for a year and a half and then began providence brace(s) until her bone age stopped growing.” Rylee and her family discovered Nemours Children’s Health, Lakeland when Dr. Khoury began working at the practice. “We followed our wonderful orthopedic specialist to Nemours,” says Allison. At Nemours Children’s, they’ve connected with an expert team of specialists that have become like family. “We have thoroughly […]

The day Maddie was born, doctors performed an X-ray to investigate fluid in her lungs. During this X-ray, they discovered signs of Rhizomelic Chondrodysplasia Punctata (RCDP). This rare condition, which affects bone growth and can lead to orthopedic and developmental challenges, was confirmed a few weeks later through bloodwork. With the help of Nemours Children’s Hospital, Delaware pediatric specialists and cutting-edge research, Maddie and her family have found a community that understands and supports them. “We were introduced to Nemours Children’s in 2017 by RhizoKids International,” shares Maddie’s mom, Jenna. “Through this partnership, we connected with the Nemours team and specialists focused on RCDP. This led to our involvement in the development of the RCDP Natural History Study, an important step in preparing for clinical trials of synthetic plasmalogen.” Maddie and her family have been actively involved in the RCDP Natural History Study conducted at Nemours, attending visits every six […]