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Patient Stories

This past year and a half has been tough on all of us, especially our children and youth. For so many, the COVID-19 pandemic has changed life as we know it. But for Nemours patients Kate and Sebastian, the pandemic is just one of many life-changing events they’ve faced. And that’s why they are both sharing their medical journeys to members of Congress during the 2021 Children’s Hospital Association (CHA) “Speak Now for Kids’ Family Advocacy Week,” to increase awareness about the ongoing and essential care provided by children’s hospitals. Kate’s Story When she was just 2 years old, Kate McKinery was diagnosed with optic pathway glioma, a brain tumor that interferes with her optic nerve and impacts her sight. The tumor also causes hormone deficiencies, resulting in abnormal liver function, type 2 diabetes and a full height potential of around 4’2. Kate has undergone multiple procedures, tests and appointments […]

When Erin Pitts faced spinal surgery as a teen, she never imagined it would impact her life in other ways. Diagnosed with scoliosis at a young age, initially the care plan for the Jacksonville, Fla., resident was to pursue a non-surgical approach to correct the curves in her spine using a back brace. When her complex scoliosis proved resistant to treatment, however, surgery became the best option for long-term results. The experience ended up changing not only her health, but also her career trajectory. Pitts first learned of her condition in the sixth grade, when she began experiencing intense lower back pain. As her condition gradually began limiting her daily activities, her mom made an appointment with her pediatrician. He referred her to Nemours for an orthopedic assessment, where she became a patient of Eric Loveless, MD, department chair of orthopedics at Nemours and a board-certified pediatric surgeon who performs […]

At 15, avid runner Manny Gonzales was diagnosed with non-Hodgkin’s lymphoma. Inspired by his physicians, he was determined to not only beat cancer, but to become a pediatric oncologist and devote his life to fight childhood cancer. He’s now in his first year of residency at the same hospital where his life was saved 10 years ago.

When one-year-old Piper’s body began to swell one afternoon, her parents thought she was having an allergic reaction. They had no idea that they were about to embark on a journey of rare illness, complex treatments, and advocacy for children’s health. Piper’s parents, Erin and Chris Lee, took their daughter to her pediatrician, expecting a quick diagnosis and an easy solution. But Piper wasn’t allergic to anything. Instead, they learned her kidneys were failing; Piper would have to be admitted to Nemours/Alfred I. duPont Hospital for Children immediately. There, pediatric nephrologists proposed genetic testing for Piper. That’s because, although it was clear that Piper’s kidney function was declining, the cause of her decline wasn’t so obvious. In order to proceed with the best treatment for Piper, her doctors needed to know just what kind of kidney disease they were dealing with. They needed the help of precision medicine, a newer […]

When Jill’s third child, Emmy, was born with a hole in her heart, Jill wasn’t too worried. Her two older sons also had the condition—called Atrial Septal Defect (ASD)—and theirs had cleared up over time. In children with ASD, blood recirculates inside the heart, and doesn’t reach the rest of the body as well as it should. Dr. Mary Mehta, Pediatric Cardiologist at Nemours Children’s Specialty Care, Pensacola, worked with the family to track Emmy’s condition. It didn’t improve, and it soon became clear that Emmy would need complex and invasive surgery to repair the hole in her heart. When Emmy was just three years old, the right side of her heart began to enlarge, presenting more risks: asthma-like symptoms and other coronary issues.  It was time to prepare for open heart surgery. Emmy’s family met with Dr. Peter Wearden, Cardiothoracic Surgeon at the Nemours Cardiac Center at Nemours Children’s Hospital […]

This article originally appeared in STAT on December 15, 2016. When 6-month-old Asher Camp was diagnosed with type 1 spinal muscular atrophy, a leading genetic cause of infant mortality, his family measured his life in days, not years. They dreaded the future, wondering how much time they would have with their beautiful baby boy. Parents of children with type 1 spinal muscular atrophy aren’t guaranteed to see their baby’s first steps, first day at school, or other treasured milestones that make up a child’s life. Instead, they watch anxiously as developmental milestones are missed, as common colds require trips to the emergency room, and as hope fades for reaching the day when a cure becomes available. Asher got lucky. He was able to take advantage of a life-changing opportunity, the kind that needs to be available to all children. Just a month after Asher’s parents, Amanda and Jeremy Camp of Lakeland, […]