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Marcella was born prematurely at another hospital in May of 2023. She had a fairly uneventful first month, until she developed Necrotizing Enterocolitis at 4 weeks. She had her feeds stopped, was put on the ventilator because her stomach was so swollen it was affecting her breathing, and IV antibiotics were started. But the disease had already progressed too far, and she continued to go downhill fast. Two days after the diagnosis she was transferred to the Nemours Children’s Hospital, Delaware NICU, and the following afternoon she had her first exploratory laparotomy. Things were looking very bleak after this first surgery. Her intestines were put into a silo, basically a clear bag that held them outside of her body so doctors could visualize what the tissue looked like. Based on what they saw, it was very likely that she would not survive as all the tissue appeared to be dead. That […]

Aubri’s journey at Nemours Children’s Hospital, Florida, is a testament to her resilience and the impact of specialized care. Aubri struggled for over a year with severe gastrointestinal issues, unable to keep food down. Her condition was so dire that she relied on feeding tubes to survive. “Aubri had an emergency tube placed in her nose and later in her stomach directly,” shares her mother, Alanda. “That was her only source of food for so long! It was awful! She was in so much pain and nauseous all the time, everything was hard.” The situation was grim, and their local hospitals seemed unable to provide the answers or care that Aubri desperately needed. The turning point came when Alanda learned about Nemours Children’s Hospital, Florida and Dr. Poulos. “It was an absolute Godsend,” she says. A friend, who had glowing experiences with Nemours Children’s, inspired Alanda to seek out the […]

For the White family, life has been full of unexpected challenges—but also extraordinary resilience and hope. Three of Seth and Hannah’s children, Samuel, Selah, and Stephen, were all diagnosed with Ellis-Van Creveld Syndrome (EVC), a type of skeletal dysplasia that restricts cartilage and bone growth and is often accompanied by congenital heart defects. Their journey, which began with the birth of their first son, Samuel, has led them across the country to Nemours Children’s Hospital, Delaware, where they found the care they needed for their children’s complex condition. The family’s story begins in Arkansas, where Samuel, now 6, was born. Hannah remembers the uncertainty surrounding Samuel’s diagnosis. “At our 20-week ultrasound, we learned that Samuel had some complex medical concerns, but even after a lot of testing, they weren’t sure of his exact diagnoses,” she said. It wasn’t until after Samuel’s birth that the family learned he had EVC, along […]

Erica and Antoine Shoemate vividly remember the moment they discovered Erica was pregnant with Nia. It was February 2017, and despite a recent visit to a fertility specialist confirming she wasn’t expecting, she received the surprising news. “I was very shocked, confused, surprised,” Erica shares. This was just the beginning of a remarkable journey filled with challenges and triumphs. Nia’s journey took an unexpected turn during a routine 20-week anatomy scan when she was measuring behind. Initially, doctors thought it might be due to Erica’s petite stature, but a visit to a maternal-fetal medicine specialist revealed a different story. Nia was initially misdiagnosed with short rib polydactyly syndrome, and Erica was advised to terminate the pregnancy. “At this point, I felt like I had to get out of that hospital’s doctor’s office. I felt the walls were closing in on me,” Erica says. After receiving the diagnosis, Erica and Antoine […]

16-year-old Alyson was living her dream of competing in horse shows with her beloved horse, Epsilon. That all changed in May 2024, when one routine jump ended in a painful fall. Alyson landed hard on her right leg, and in an instant, she knew something was wrong. “Immediately I was in a lot of pain,” Alyson recalls. “The EMT helped me out of the ring, but I couldn’t walk any further. My mom took me to the closest hospital where they told me I fractured my leg and may need surgery. I was so disappointed and discouraged because I was not going to be able to ride or compete for a long time.” For Alyson, an injury that would require surgery and months away from riding was a devastating blow. Referred by her initial doctor, Alyson’s journey led her to Nemours Children’s Hospital, Florida, and into the care of Dr. […]

At just 7 years old, Aryia has already shown remarkable strength and resilience on her journey with cerebral palsy. Diagnosed at 10 months, Aryia has faced her challenges head-on with the help of her dedicated family and the orthopedic team at Nemours Children’s Hospital, Florida. It all started when Nina, Aryia’s mother, noticed something unusual after bringing her newborn daughter home. “Her legs would jerk constantly,” Nina recalls. But due to Aryia’s premature birth, doctors were hesitant to give a diagnosis right away. After a few months of evaluations, Aryia was officially diagnosed with cerebral palsy in September 2017. Before moving to Florida, Aryia’s family faced an overwhelming and complicated care plan while living in New York City. They frequently traveled between specialists, even going as far as Philadelphia for medical appointments. “Aryia’s muscle spasms caused her to cross her legs excessively, preventing her from standing or walking. We were […]