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Raising a child with cerebral palsy (CP) comes with unique challenges and triumphs. In this Q&A, Declan’s mom, Kianna, shares her family’s journey—from navigating his diagnosis to finding the right care team at Nemours Children’s Hospital, Delaware. She reflects on the impact of CP on their daily lives, the importance of expert support, and how Dr. Shrader and the CP team have given them hope for Declan’s future. What is the most challenging part of the day for Declan? Declan’s biggest day-to-day challenge is working around his mind-body interactions. He is a very active kid and loves to play games at recess with his friends, but his legs don’t always cooperate. He has always been able to find a way to adjust, but his competitive spirit means he gets frustrated with the limitations CP places on him. What is Declan’s favorite part of the day? Declan’s favorite part of the […]

At 12 years old, Kollin isn’t letting anything slow him down. A lifelong patient at Nemours Children’s Hospital, Delaware, Kollin’s journey to his narcolepsy diagnosis started when he found himself constantly exhausted. “My father has narcolepsy, so when I was tired all the time, my mom requested to have a sleep study done,” Kollin shares. A sleep study, also called a polysomnogram, is an overnight test that helps doctors diagnose sleep disorders, including narcolepsy. During the study, sensors are placed on different parts of the body to monitor breathing, brain activity, heart rate, and movement while a child sleeps. It provides essential information to guide treatment and improve sleep health. “I really don’t like sleep studies because of all the wires and goop in my hair,” shares Kollin. But after his second long sleep study, the results were clear—he had narcolepsy, just like his dad. The diagnosis meant he could […]

When Latoya welcomed her daughter, Rhy’lee, into the world, she had no idea how much resilience her little girl would have. Diagnosed at birth with hypoxic-ischemic encephalopathy (HIE), Rhy’lee spent her first 45 days in the hospital, relying on medical equipment to survive. Over time, her challenges became clearer—cerebral palsy, lung issues, and a need for a G-tube. For years, Rhy’lee faced constant hospital stays, battling lung complications that made life uncomfortable for both her and her family. “She was in and out of the hospital back-to-back,” Latoya recalls. “She was so uncomfortable.” It wasn’t until Rhy’lee was 5 that her parents, Latoya and Devon, were introduced to Nemours Children’s Hospital, Florida. A medical complex in downtown Orlando connected her with Dr. Aga Lewelt, and soon, Dr. Jason Malone and Dr. Alec Stall joined Rhy’lee’s care team. From that moment, everything changed. At Nemours, Rhy’lee’s family found more than expert […]

“Giving back and helping others is one of the best feelings. To know you helped someone when they were feeling scared and alone.” – Allison, Former Patient, Current Nemours Associate I’m Allison and I’m 26 years old and I work in the Nemours Cardiac Center at Nemours Children’s Hospital, Delaware in Wilmington. I was diagnosed at birth with Tetralogy of Fallot with anomalous origin of the anterior descending coronary artery from the right coronary artery. I had my first open heart surgery at 4 days old for the transannular patch to repair the ventricular septal defect (VSD). In all, I had three open heart surgeries (two in 1998 and one 2013), six cardiac catheterizations and two loop recorders (in 2020 and 2023, respectively). I was also diagnosed at birth with hip dysplasia in my left hip, and I wore a Pavlik harness [a shoulder harness that attaches to foot stirrups] […]

When Logan was born at just 31 weeks, his parents knew his journey would be anything but typical. After a complicated pregnancy and an early arrival, Logan faced significant medical challenges from the very start. Diagnosed with Periventricular Leukomalacia (PVL) and later with Cerebral Palsy and Autism, his early years were filled with therapies, surgeries, and specialists as his family sought the best possible care. Melissa, Logan’s mom, was determined to give her son every opportunity to thrive. From traveling to St. Louis for eye surgery and Selective Dorsal Rhizotomy (SDR) to consulting with a CP specialist in Texas, their family left no stone unturned. But when Logan was 8 years old and they were faced with the decision of hip surgery, their search led them to Nemours Children’s Hospital, Delaware, and Dr. Wade Shrader. The decision to pursue an osteotomy was not an easy one. “We consulted with numerous […]

When Piper was just four months old, her parents faced an unexpected concern: their pediatrician noticed her head size was not typical. After a series of tests, Piper was diagnosed with microcephaly. By the time she was nine months old, she was missing developmental milestones, and by her second birthday, she had also been diagnosed with cerebral palsy. Piper’s journey also brought unique challenges with communication and mobility. As a nonverbal child, Piper relies on creative ways to express herself, and her family has embraced learning to understand her cues. Piper is also not yet mobile, affecting her ability to move around and get from one place to another on her own. In 2022, the family relocated to Florida and began researching the best care options for Piper. “We spent a lot of time looking for facilities that could meet Piper’s needs,” her mother, Christy explains. “Nemours was the best […]