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 […]
