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Patient Stories

When Cara was very young, her family sought out medical help to understand why she kept falling so 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 her […]

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 […]

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 […]

Eloise, a dynamic and determined young girl, received a diagnosis of cerebral palsy just before her second birthday.  After Eloise celebrated her first birthday, her parents assumed she would start walking soon, but as each month passed by, despite their initial hopes and patience, Eloise had still not taken her first steps.  Her parents recall the pivotal moment when, at 18 months, Eloise was referred by her primary care physician for evaluations and specialized care. Their journey led them to Nemours Children’s Hospital, Delaware where Eloise underwent a series of comprehensive evaluations, including MRI, EKG, and X-rays. While the test results appeared normal, Eloise was diagnosed with spastic diplegic cerebral palsy due to her muscle spasticity and gait difficulties.  Eloise’s family learned to their surprise that in a majority of cases, the specific cause of cerebral palsy is unknown.  Eloise took her first steps shortly before her 2nd birthday, albeit […]

Last July, I was in the car going for a normal drive with my parents when suddenly the unthinkable happened. Our car flipped over and I was ejected 30 ft from the car. I had suffered a traumatic brain injury (TBI) with left hemiparesis. Due to the seriousness of my injuries, I was immediately airlifted to Nemours Children’s Hospital, Delaware. For my first month in the hospital, I was in the Intensive Care Unit (ICU). At the start of my second month in the hospital, I spent most of my time in rehab. I had to learn how to talk, walk, and eat solid foods all over again. I also had to spend about 3 months in a wheelchair.   When I was initially released from the hospital I continued to go to therapy 5 days a week. But life at home was now different. I had to walk around the […]

Dillan’s hearing loss was discovered during a routine hearing scan, revealing that she was deaf in her left ear. While Dillan’s family had noticed some challenges with communicating before seeking treatment at Nemours Children’s Hospital, Florida, they were shocked to learn this news. Her family was very eager to find answers and solutions. Having been involved with the groundbreaking of Nemours Children’s Hospital, Florida 10 years ago, Dillan’s family was drawn to the comprehensive care provided under one roof. “Nemours provided seamless care. I love being able to communicate with her doctors in real time,” says Dillan’s mom. With the help of Dr. Morgan Wilcox, Dillan now has a hearing aid for her left ear, making an incredible difference in her hearing. “From the first day I met her, Dillan is always smiling and just has this contagious, feel-good attitude that you can’t help but smile and laugh along with […]