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Myah has been a fighter since the day she was born. If two parents each have their own form of skeletal dysplasia, it is possible for their child to inherit both types. This was the case for lovely Myah who carries a diagnosis of both achondroplasia and Kniest dysplasia. Given her complex medical needs, at 5 months of age her parents transferred her inpatient care across the country to Delaware to receive guidance from the Nemours skeletal dysplasia team.  She required coordinated multidisciplinary care from multiple specialists over her months-long hospital stay, which was possible given the specialized expertise of Nemours providers. Nemours offers care to individuals with skeletal dysplasia until the age of 35, so during Myah’s admission, her parents Brian and Alana also received multidisciplinary evaluations with the Nemours skeletal dysplasia team.  We cannot wait to see what the future holds for Myah and her family, and will be here to support them along the […]

Max Paul turned 18 in July this year. But several months after he was born at Arnold Palmer Hospital for Children in 2004, he vomited blood and went to the emergency room there. Max was admitted, but they didn’t have a bed for him, so he and his mom spent the night in the ER at Arnold Palmer, sleeping on a stretcher. Mom Lori remembers a geneticist from Nemours was added to Max’s care team, and Max was diagnosed with cystic fibrosis. He joined the CF clinic at Nemours.  Around that time, mom remembered Nemours was applying to build the hospital in Orlando, and so when the question would arise, “Does Central Florida need another children’s hospital?,” the answer in her mind was a resounding, “Yes!”   “We were at the right place, at the right time to become part of Nemours,” said Lori.  When it came time for the groundbreaking ceremony […]

Edwin was born with Pierre Robin sequence, a rare and serious condition where a baby’s jaw is so small that the tongue blocks the airway.  Because of the complexity of his case, Edwin was monitored closely in the NICU until our craniofacial airway team, including a plastic surgeon and otolaryngologist, were able to open his airway by bringing his jaw forward. “My initial goal, after making sure Edwin was safe, was to reassure his parents that everything was going to be okay. We had many discussions about the options and decided that mandibular distraction—bringing the jaw forward slowly over time—was the right option for Edwin and his family,” explains Dr. Brian Kellogg, division chief of plastic surgery, Nemours Children’s Hospital, Florida. “Using a customized computer model, I was able to carefully plan Edwin’s surgery and the movements of his jaw bone.”  Because Edwin had been in the NICU since the day he was […]

Karalyn first came to Nemours after she was suffering from some abdominal pain, which led to a visit at an ER in their hometown of Titusville. Something didn’t satisfy her parents about that visit, and they were concerned that something else was wrong.   They immediately sought help at Nemours Children’s Hospital, Florida. There, an ultrasound found a tumor associated with a genetic disease called Von Hippel-Lindau (VHL) that was in her adrenal gland. In 2020, the 8-year-old she had an 8-hour surgery and stayed for a few days afterward for observation.   It turned out Karalyn was the first one in her family to be diagnosed with VHL. Later, younger brother Westin had a similar issue when he was 6, and also required surgery with the same surgeon at Nemours. Then, dad got a diagnosis, but had to have an adult surgeon at a hospital for adults, lamented mom. […]

Jay loves wakeboarding—in fact, he’s a wakeboarding national champion! But when he fractured his right femur in June 2020 during a wakeboarding accident, he was brought emergently to Nemours Children’s Hospital, Florida to see Dr. Zachary Stinson, who specializes in pediatric orthopedic trauma and sports medicine surgery. Jay had his femur surgically repaired with a metal rod, and he began the gradual journey to walking, running, and wakeboarding again.  Following his surgery, Jay was determined every single day in therapy, and he was cleared to start running just months following surgery, and eventually to full wakeboarding activities by six months!  Jay had the metal rod removed 18 months following his initial surgery, and he was completely cleared by Dr. Stinson a few weeks later.   Jay’s mom Ashley credits Nemours doctors, physical therapists, and nurses for being comforting not only to their patients, but also patient families. “The nurses and doctors explained treatments to Jay and me,” she said. “They would also […]

My name is Michael Shucoski. I’m 12 years old and am starting the 7th grade. I really love baseball and my favorite positions are pitcher and first base. This past spring, I developed a sharp pain in my elbow that would not go away. It was very irritating, and I couldn’t even throw the ball without pain.   My mom took me to Nemours Children’s Health, Deptford for treatment, where I met Dr. William Emanuele (Dr. Bill), a sports medicine specialist. After he performed tests and took x-rays, my diagnosis was medial elbow apophysitis, otherwise known as “little league elbow.” It’s an inflammation of the growth plate that occurs in young baseball players from the constant throwing motion. It’s fairly common in pitchers like myself. The treatment was a rehab program consisting of targeted strengthening and stretches as well as six weeks of rest, which meant no throwing, but for me, […]