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Crew’s journey with Nemours Children’s Health began when he was just 9 months old. After being hospitalized for a seizure, his family met Dr. Sheth, a neurologist at Nemours Children’s Health, Jacksonville. “Dr. Sheth listened to everything I told him and watched videos I had captured of Crew’s seizures,” his mom recalled. “He instantly requested genetic testing, which gave us his diagnosis of Dravet syndrome.” Dr. Sheth’s quick thinking made all the difference. “It was so critical because there are many anti-seizure drugs that can worsen seizures in children with Dravet syndrome. Because it is a rare syndrome, many children get diagnosed later in life, but we are so very thankful that the Nemours Children’s team was able to give us an early diagnosis so we could treat it appropriately.” Before finding the right treatment, life for Crew’s family was filled with uncertainty and fear. “Crew was seizing almost weekly, and we […]

At just 14 years old, Anzlie has faced significant challenges, yet she remains determined and strong. A first-year high school student, Anzlie has a passion for animals, even raising chickens in her backyard. She is an athlete and a dedicated student in the International Baccalaureate program, balancing academics with volleyball and CrossFit. Anzlie also manages both Type 1 diabetes and scoliosis, two conditions that require continuous care.   Anzlie’s journey with Type 1 diabetes began shortly after she finished first grade. Her mother noticed that Anzlie was excessively thirsty and had lost weight, prompting them to consult a doctor. The diagnosis was confirmed, and they were quickly referred to Nemours Children’s Health, where Dr. Larry Fox and a supportive endocrinology team helped them learn to manage the condition. Anzlie quickly adapted to monitoring her blood sugar and adjusting insulin.   Despite the challenges of diabetes, Anzlie embraced an active lifestyle. She participated […]

Dean’s parents were faced with a daunting and unexpected experience when their son was just 6 days old. “We found ourselves in the emergency room as scared, brand-new parents,” his mom, Lauren recalls. “We knew something was wrong, but our concerns were dismissed, and as a result, we were back at a different emergency room at 6 weeks old.” They felt the weight of uncertainty as they navigated the early days of Dean’s life. “We were lucky that our son’s pediatrician called the hospital to urge for an appropriate work up, which is how we received his diagnoses of severe hydronephrosis, vesicoureteral reflux, and megaureter,” shares Lauren. After two negative experiences at different health systems early in his life, Dean’s parents knew they needed to find a place that could provide him with the best possible care. “Dean’s pediatrician and a close friend of mine, Dr. Adeline Melvin, completed her […]

Shaun’s journey with Nemours Children’s Health began when his family noticed an unusual bump on his leg while he was sitting on the couch, playing a video game. They took him to see his pediatrician where he was referred to Nemours Children’s. There, he was diagnosed with an osteochondroma on his left femur. An osteochondroma is a common, non-cancerous bone tumor that can develop in the growing bones of children. Despite the diagnosis, Shaun continued to lead an active life playing baseball, a sport he was passionate about. “When we first discovered the osteochondroma, it didn’t hurt him at all,” his mother, Renee recalls. “But as he continued to grow, so did the lump. Eventually, it became so large that it would rub against his thigh muscle whenever he ran, causing him significant pain and forcing him to stop.” This change in his condition was a clear sign that they […]

Isaac’s journey with Nemours Children’s Health began after a long search for answers.  Around his first birthday, his parents noticed that something wasn’t right. “Isaac was extremely nauseated, underweight, and falling behind developmentally,” his mom recalled. After months of uncertainty, genetic testing revealed a rare diagnosis: SYNGAP1, a condition that affects only about 475 people in the U.S. and roughly 1,500 worldwide. SYNGAP1 causes developmental delays, epilepsy, and autism, making even everyday milestones more difficult.  Before coming to Nemours Children’s, Isaac’s seizures were constant and resistant to medication. “His neurologist said it was as if his brain were on fire,” his mom said. “He would just sit and stare off into space most of the day.” At just 3 years old, SYNGAP1 has left Isaac fully disabled, and he is not yet walking or talking. The emotional and physical toll was heavy for his family, who had spent years visiting multiple hospitals and doctors without answers.  That changed when […]

In April 2024, Logan began experiencing persistent right shoulder pain. What made it particularly confusing was that he hadn’t experienced any recent injuries or trauma. His family, concerned, took him to see his pediatrician, who, after a thorough examination, referred them to a local pediatric orthopedic specialist. Whittney, Logan’s mother, recalls, “When the pain started, Logan was hurting all the time. He kept his arm in a sling for a little over a month, but there was no improvement. He had trouble putting on his own shirt and couldn’t lift a carton of milk. He couldn’t play baseball or do any of the things he enjoyed so it started to affect his mental health.” The local orthopedic specialist was diligent in trying to pinpoint the cause of Logan’s discomfort. Over the course of a month, he ordered a series of lab tests and imaging studies. Despite these efforts, the specialist […]