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When Brayden was born, he was premature and was having a hard time gaining weight. His family took him to weekly weight checks with little to no change taking place. After a change of pediatricians, they were told he had a heart murmur. Brayden and his family were referred to Nemours Children’s Hospital, Delaware for further evaluation with the cardiac team. Brayden was diagnosed with dilated cardiomyopathy, requiring the initiation of medication to observe his response. With additional testing, the diagnosis of Barth Syndrome was confirmed. Barth Syndrome is a rare condition that causes an enlarged and weakened heart, weakness in muscles, frequent infections, and more. Due to his inability to gain weight, a G-tube, otherwise known as a  Mickey button, was placed to provide extra calories and nutrition to Brayden which overnight feeds. Brayden received yearly cardiac catheterizations to monitor the function of his heart. In December 2014, when […]

Cara’s story started when she was very young, and her family sought medical help to understand why she fell often. After visits to various specialists, including optometrists, orthopedists, and neurologists, an MRI revealed a spinal cord tumor. Three days later, Cara underwent surgery, leaving her left leg without any feeling or ability to control movement. This led to several years of KFO braces, rehabilitation, emotional processing, and accidental injuries that posed diagnostic challenges due to the lack of sensation in her leg. Cara received a diagnosis of Charcot joint in her knee, after numerous bone infections, surgeries, and prolonged hospital stays. By the time Cara was entering the eighth grade, she decided she wanted her life to have more freedom from her diagnosis. Compiling her thoughts into a comprehensive letter, Cara presented her case for leg amputation to Elizabeth W. Snyder Endowed Chair in Osteogenesis Imperfecta, Dr. Jeanne Franzone, and […]

Delaware students Maxine and Vivian Ruggerio aren’t immune to the allure of social media.  But they also believe that most teens are struggling to navigate the online world. From perfectly edited images to overtures from strangers, social media presents a minefield of challenging issues.  The sisters are working on an e-book to provide tips to teens who want to protect their mental health and personal safety while online. As they researched their book, they conducted a survey of peers, discovering that 100% of their respondents used social media. More than half said social media made them feel stressed or bad about themselves. And more than half felt that more controls are needed, such as added privacy or safety features.  Maxine and Vivian joined psychologists from Nemours Children’s Health, Delaware in a recent panel discussion on teen mental health and social media. Delaware Attorney General Kathy Jennings; Delaware State Rep. Krista […]

Everlee’s story begins with a diagnosis of hepatoblastoma, a rare form of liver cancer, at the age of 17 months. Her mother, Jenna, recalls the moment when she first noticed something amiss with her daughter’s health. “It was right around Christmas of 2022,” says Jenna. As first-time parents, Jenna and Jarod couldn’t shake the feeling that Everlee’s belly seemed larger than normal. Despite reassurances from pediatricians, inklings of concern persisted, especially when family members echoed their observations. “Something just seemed off,” says Jenna. “I was giving her a bath one day, and I laid her out on the towel and thought, ‘Oh my gosh, she just looks so bloated.’” Alarmed, Jenna wasted no time in seeking medical attention. She was able to get Everlee in to see her local pediatrician at their last appointment for the day on Friday, January 13th. The routine examination led to the discovery of a […]

Amid the beeping machines of the hospital, there exists a beacon of hope and joy in the form of our dedicated Child Life department. Julia Greco has been a Child Life specialist at Nemours Children’s Hospital, Delaware for the past two years. With her warm smile and gentle demeanor, Julia has made it her mission to ensure that even the youngest patients find comfort and happiness during their stay.  “It is so important to us that our patients don’t miss out on childhood experiences,” says Julia. “The child life department at Nemours Children’s Health is dedicated to providing patients and families free services and activities to make their lives as normal as possible despite their situation.” Julia received a bachelor’s degree in human development & family studies from Penn State and furthered her education in child life studies at Missouri State. She was drawn to this career path because of how special and unique […]

Hudson’s journey with cerebral palsy began at just 3 months old when he was diagnosed with polymicrogyria. His parents, determined to give him the best care possible, sought out specialized treatment. Their quest led them to Nemours Children’s Hospital, Florida where they found not just medical expertise, but a supportive community dedicated to Hudson’s well-being. Before Nemours Children’s, Hudson had already undergone care at various children’s hospitals in North Carolina and Colorado. However, it was when they were referred to Nemours that Hudson’s family found a comprehensive approach to his care, encompassing not just medical treatment but also emotional support and encouragement. “We love Nemours,” Hudson’s mom shares. “Every encounter we have with doctors, nurses, and other clinical staff has been exceptional. Dr. Malone is just outstanding! He is approachable, caring and kind. I felt that he is fully committed to benefit the kids he serves. He is also an […]