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Nemours Children’s Health, Florida

I still remember the day Koal was born like it was yesterday. Just giving birth and hearing the daunting words that our sweet baby boy had a heart problem right away was enough to make any parent panic. At birth, Koal was diagnosed with aortic stenosis. Koal had a heart cath procedure at just 1 day old. They went in through the groin and into the heart with a balloon to open up the aortic valve. He had this procedure done again at 3 months old. After that, it was years of doctor appointments, testing, and imaging to monitor it. When he turned 15, he finally had open heart surgery to replace his aortic valve. As he grew older, Koal struggled with getting winded when running and when he tried to play the trumpet in a band, even just regular playing. Certain medicines would cause his heart to beat extra fast which would make […]

When Julieta was just 1 month old, she was diagnosed with Spinal Muscular Atrophy type 1 (SMA Type 1). SMA is a rare genetic condition that causes muscle weakness and atrophy, significantly impacting Julieta’s ability to walk, sit up, and control her head movements. It also affected her ability to speak and eat. Julieta’s mother, Melissa, recalls the initial shock and heartbreak that accompanied the diagnosis: “After I got the call with her results, I was told by five neurologists that she was not going to make it past 1 year of age. Obviously, this put me in a sad and grieving mental state. We as a family were devastated.” Shortly after receiving her diagnosis, Julieta was referred to Nemours Children’s Hospital, Florida by a neurologist in Miami. “After I visited Nemours and felt finally safe and with big hopes for my daughter, I went back to Dr. Miller in […]

Brody’s journey with Nemours Children’s began before he was even born. During a routine anatomy scan, Beth and her husband learned that one of their twins, Brody, would be born with a cleft lip and possibly a cleft palate. “I was pregnant with twins through IVF and was sent to Nemours Fetal Care,” shares Beth. “After finding out about Brody’s diagnosis, we did a lot of research and compared to teams in Tampa. After a facetime with Dr. Kellogg to ask him questions, we knew we found Brody’s doctor and team.” Upon Brody’s birth, he encountered difficulties due to his cleft lip and palate. “Prior to surgical intervention, Brody struggled with feedings; milk would come out his nose, he drooled a lot, and I don’t think he was able to hear well,” Beth shared. These challenges emphasized the need for specialized care, which they found at Nemours Children’s Hospital, Florida. […]

For elite gymnast Maddy, the journey to greatness wasn’t without its hurdles. But with determination and the expert care at Nemours Children’s Health, Maddy is back on her feet, ready to conquer the mat once again. Maddy’s athletic career took an unexpected turn on January 25, 2023, during a routine practice session at Temple University. A gymnast on the collegiate team, she faced a setback that would challenge her both physically and mentally—a ruptured Achilles tendon. Before receiving treatment at Nemours Children’s, Maddy experienced the full weight of her injury. “I was unable to walk, move my foot in any direction, and do everyday activities like go to class,” she recalls. “I was also in an abundance of pain every day that led to many mental breakdowns.” Having received treatment from Nemours Children’s Health, Jacksonville for years growing up, she knew she would get exceptional care for her new injury. […]

When Andrew, now 28, reflects on his journey with Nemours Children’s Health, he describes it as nothing short of miraculous. Diagnosed with hepatoblastoma that had metastasized to his lungs and brain as a child, Andrew’s journey to recovery has been thanks to his expert medical care and unwavering support system. In November 1999, 3-year-old Andrew woke up in the middle of the night complaining of shoulder and abdomen pain. His parents, concerned, took him to the pediatrician in Augusta, Georgia, where appendicitis was initially suspected, and surgery scheduled. However, a perceptive surgeon, recalling a rare medical condition from his studies, insisted on further tests. The results were alarming: Andrew’s cancer markers were sky-high, pointing to a serious diagnosis. The local medical team quickly realized they needed specialized help, so he was transferred to a children’s hospital. The surgeons there reached out to Dr. Adela Casas-Melley, who was working at Nemours […]

When Marina was just 6 months old, her family noticed something unusual—her neck often fell to one side. This seemingly minor issue led to a series of medical consultations and diagnoses that would shape the future for Marina and her family. Diagnosed with torticollis and abnormally low muscle tone (hypotonia) by her pediatrician, Marina was referred to a neurologist at Nemours Children’s Hospital, Florida for further evaluation. Upon consulting with Nemours Children’s specialists, it was discovered that she was experiencing frequent seizures. “Various specialists conducted studies, leading to the discovery of congenital cytomegalovirus on February 2, 2022, just after her first birthday,” shares her mother, Kenialys. “This news left us shocked, confused, sad, anxious, and scared. However, the dedicated care from healthcare professionals at Nemours helped us regain optimism and hope for Marina’s future.” Cytomegalovirus (CMV) is closely related to the viruses responsible for chickenpox and mononucleosis (mono). Babies infected […]