ARTICLES RELATED TO:
Uncategorized

For Latisha, osteogenesis imperfecta (OI) has always been a part of life. Diagnosed around age 6 after multiple leg fractures, she knew the challenges that came with the condition. When she became a mother, she was determined to find the best possible care for her children. That search let her to Nemours Children’s Hospital, Delaware – the same place she had come to trust for her own care. Her children, Emerson and Lilly, were both diagnosed with Type 1 OI at birth. “Without the care from Dr. Franzone and the entire OI team, I’m not sure where my kids would be,” Latisha shared. OI, commonly known as brittle bone disease, is a genetic disorder that prevents the body from building strong bones. For Emerson, those fractures started early – he broke his leg three times in just one year after learning to walk. Lilly also faced fractures within months of […]

When I was 6 years old, my mom noticed that my collar bone was higher on one side than the other. Since both my aunt and my grandfather have scoliosis, my mom was familiar with what it looked like. She had contacted a neighbor who was a doctor, and he came to our house to do a regular check to see if I had scoliosis. He said I didn’t have it, but my mom had a gut feeling that something was up, and she took me to Nemours Children’s Hospital, Florida. My mom and dad found Nemours Children’s when we moved to Lake Nona in 2014. Nemours became our primary care provider, and my siblings and I would see our pediatrician at Nemours. When my mom thought that I might have had scoliosis, things became a bit more serious. My father is a personal injury and medical malpractice attorney. Because […]

Diagnosed with microtia at birth, Karinda’s hearing was immediately tested. The results confirmed that she had hearing loss due to bilateral microtia and atresia. Microtia is a congenital condition where the outer part of the ear (the pinna) is smaller than normal and may have an unusual shape. In bilateral cases, both ears are affected. After spending 8 days in the NICU, Karinda was transferred to Nemours Children’s Hospital, Delaware where her family first met the team that would guide them through a long-term care journey. From the start, it has been a collaborative effort among expert Nemours Children’s specialists to provide Karinda with the best possible care. Now 8 years old, the most recent step in Karinda’s treatment has been ear reconstruction surgery. This procedure has brought together Nemours physicians from across the country including Dr. Angelo Leto Barone from Orlando and Dr. Mario Aycart from Delaware. Karinda has […]

Born with esophageal atresia type A and a history of chronic pneumonia, Island’s health journey has been far from straightforward. At the age of 9, the diagnosis of thoracogenic scoliosis added another layer of complexity, impeding even the simplest of tasks. He struggled to tie his shoes and often experienced intense back pain while doing everyday things. Sitting in class, walking, and even trying to sleep at night proved difficult. At Nemours Children’s Health, Jacksonville, Island was surrounded by specialists who treated him with care, skill, and a dedication that went beyond the clinical. His journey began with a comprehensive evaluation by Dr. Kevin Neal, an expert orthopedic surgeon, who diagnosed the severity of his scoliosis and recommended spinal fusion surgery. This procedure, which involves fusing vertebrae together to straighten the spine, was a critical step in managing his condition and improving Island’s quality of life. The care Island received […]

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. […]