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Patient Stories

Jaiden’s medical journey began with a diagnosis of Fibular Hemimelia during a routine anatomy scan at just 20 weeks into his mother, Megan’s, pregnancy. Little did they know, this diagnosis would lead them to Nemours Children’s Hospital, Delaware. Upon learning about her son’s condition, Megan was very shocked. “It was unexpected, but we knew we had to do everything we could to give Jaiden the best chance at a fulfilling life,” she shares. “Though Jaiden always got around fine, if he didn’t have surgery, his legs would be drastically uneven and would not be able to walk.” Their journey with Nemours Children’s began in 2012 when Megan sought a second opinion on Jaiden’s condition. “A family friend suggested Nemours, and from the moment we walked through the doors, we knew we were in good hands,” Megan reflects. Dr. L. Reid Nichols, a renowned pediatric orthopedic surgeon, became an integral part […]

From the moment he was born, Luca has been full of surprises. He entered the world in February 2022, a month earlier than expected. Anticipating a baby girl, complete with a gender reveal celebration, Luca’s parents were surprised by his arrival. Their anatomy scan’s mistaken prediction left them pleasantly surprised by their baby boy. Shortly thereafter, concerns arose regarding Luca’s kidney health, along with some unfavorable lab results. Luca was transported to the NICU and later taken to Nemours Children’s Hospital, Delaware. “When the doctors at Inspira Mullica Hill started to get an inkling that Luca had serious kidney issues, they recommended right away that we be transferred to Nemours Children’s,” says his mother, Cory. “We appreciated their honesty so much, as they explained to us that they didn’t have the capability to deal with Luca appropriately. One doctor even said that if this was his child, he would have […]

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 […]

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 […]