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Nemours Children’s Health patients Naheim Smith and Reign Jefferson were both diagnosed with sickle cell disease at a young age. Thanks to treatment at Nemours, Naheim has been cured of sickle cell disease, and Reign is now better able to manage the disease and is thriving.   On June 11 and 12, Naheim and Reign joined the National Office’s Federal Affairs team on Capitol Hill, along with Dr. Stephanie Guarino, a hematologist/oncologist at Nemours Children’s Hospital, Delaware, as a part of the Children’s Hospital Association’s annual Family Advocacy Day.    Naheim’s and Nevaeh’s Story   Naheim was diagnosed with sickle cell disease when he was under a year old. During his early childhood, he experienced pain crises and strokes, which led to many hospital visits at Nemours Children’s Hospital, Delaware. After one stroke, his doctors discovered he had Moyamoya disease – a rare disorder caused by blocked arteries at the base of the […]

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 […]

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 […]

At 12 years old, Kollin isn’t letting anything slow him down. A lifelong patient at Nemours Children’s Hospital, Delaware, Kollin’s journey to his narcolepsy diagnosis started when he found himself constantly exhausted. “My father has narcolepsy, so when I was tired all the time, my mom requested to have a sleep study done,” Kollin shares. A sleep study, also called a polysomnogram, is an overnight test that helps doctors diagnose sleep disorders, including narcolepsy. During the study, sensors are placed on different parts of the body to monitor breathing, brain activity, heart rate, and movement while a child sleeps. It provides essential information to guide treatment and improve sleep health. “I really don’t like sleep studies because of all the wires and goop in my hair,” shares Kollin. But after his second long sleep study, the results were clear—he had narcolepsy, just like his dad. The diagnosis meant he could […]

“Dr. Gannon and the whole team changed my life … Dr. Berman is incredible at what she does. She saved my life and I’m forever grateful for her.” – Jenna, patient When I was 13 years old, I went for a routine well visit. My doctor was doing an examination on my neck and noticed my thyroid felt enlarged. She sent me to get labs and an ultrasound. My labs confirmed that I had Hashimoto’s thyroiditis. Then, we received the results from my ultrasound. It showed that I had two thyroid nodules. I had a small one on my left side, and then a bigger one on my right. The border of the nodule was irregular and calcified. This looked suspicious. I was referred to a Nemours endocrinologist, Dr. Doyle. He told my mom and I that he recommends another ultrasound and to visit another endocrinologist who specializes in treating […]