ARTICLES RELATED TO:
Patient Stories

When Viana first walked through the doors of Nemours Children’s Hospital, Delaware, she felt something she hadn’t in days: relief. Her son, Koa, had been diagnosed with osteogenesis imperfecta (OI), a rare genetic disorder often called “brittle bone disease.” Before Koa was even born, doctors warned Viana that his chances of survival were low. “Almost every doctor I saw just gave me the same answer, that he wouldn’t live,” she shared. But Viana believed in her baby – and found a team at Nemours Children’s who believed in him, too. Now one year old, Koa is doing more than surviving, he’s thriving. Thanks to specialized OI care, bone-strengthening medications, and the compassionate support of his OI team including medical care and orthopaedic care, Koa is living a full and joyful life. Though OI can be life-threatening, new research from Nemours Children’s is shedding light on a more hopeful future for […]

For 15-year-old Elizabeth, softball has always been more than just a game—it’s a passion. As a high school varsity catcher and a dedicated travel ball player, Lizzy had her sights set on playing at the collegiate level. Then came a play that changed her season. During a game, Lizzy was catching when a runner crashed through her left arm, leaving her with a superior labrum anterior and posterior tear and a small rotator cuff tear. The injury sidelined her, keeping her from the sport she loved and limiting her daily activities. Lizzy was taken straight from the field to Nemours Children’s Hospital, Delaware where initial tests ruled out broken bones. However, with persistent pain and swelling, an MRI was scheduled the following week. The results revealed a labral tear, leading Lizzy to Dr. Alvin Su at Nemours Children’s Health, Deptford. From the start, Dr. Su and his team approached Lizzy’s […]

At just 5 years old, Frankie is already proving that determination knows no bounds. Born with Arthrogryposis Multiplex Congenita (AMC), she has trouble with her joint moving the way it should. But with the expertise of the orthopedics team at Nemours Children’s Hospital, Delaware – including Dr. Jennifer Ty for upper extremities and Dr. Reid Nichols for lower extremities – Frankie has gained strength, confidence, and the tools she needs to thrive. During her mother, Lindsay’s, 11-week ultrasound, doctors noticed an unusual positioning of Frankie’s arms. This was a moment that changed everything for Lindsay and her family. “The rest of the day is a blur,” Lindsay shares. “We started genetic testing, but there were no solid answers. It was very overwhelming.” Uncertainty followed Lindsay and her family throughout the pregnancy, with no definitive diagnosis until Frankie’s arrival. But one pivotal meeting at 36 weeks helped to ease some of […]

When Yara was born, her family received news that they hadn’t anticipated – she didn’t pass her newborn hearing screening. While she was a happy baby who responded to sounds and hit developmental milestones, follow-up tests eventually confirmed that she had mild hearing loss. “At first, I had so many questions and concerns about her future – how this might affect her education, her ability to grow into adulthood with this diagnosis,” Yara’s mother, Ashley shares. “But as a family, we knew we would navigate this challenge together.” After receiving a referral from their pediatrician, Yara’s family turned to Nemours Children’s Hospital, Florida for answers. It was when they met Dr. Morgan Wilcox, pediatric audiologist, that they finally felt they fully understood Yara’s diagnosis. “We immediately felt at ease with Dr. Wilcox and her comforting and reassuring approach,” says Ashley. “She explained everything clearly, answered all our questions, and helped […]

For 10-year-old Taylor, every step of her journey has been guided by determination, expert care, and a team that feels more like family. Diagnosed at birth with fibular hemimelia, proximal femoral focal deficiency (PFFD), clubfoot, and leg length discrepancy, she has faced challenges with mobility from an early age. But with the right medical team by her side, Taylor is making incredible strides toward walking on two evenly balanced feet. Taylor’s family had long placed their trust in Dr. Shawn Standard, a highly respected specialist in limb lengthening and reconstruction. So when Dr. Standard moved his practice to Nemours Children’s Hospital, Florida, in fall 2024, Taylor’s family didn’t hesitate to follow. Under the care of Dr. Standard, Taylor has undergone a series of treatments designed to improve her mobility and function, including super ankle surgery, external and internal fixators for limb lengthening, ankle fusion, and the placement of 8 plates. […]

At 13 years old, Emma keeps a packed schedule. She’s a multi-sport athlete, playing field hockey and lacrosse and running track. All sports that require endurance, strength, and, of course, strong breathing. But in the summer of 2024, during a track meet, Emma found herself struggling to catch her breath. Emma had experienced breathing issues before and had even been treated for asthma as a child. But this time, things felt different. So, her family turned to a place they knew and trusted: Nemours Children’s Hospital, Delaware. “We’ve been going to Nemours Children’s since Emma was little,” says her mom, Melissa. “Even though we don’t live super close, we’ve always been happy with the care we’ve received there. We continue to go back when we need care beyond what our family doctor can provide.” Emma first saw the pulmonology team at Nemours, but after a thorough evaluation, they suggested the […]