When Piper was just a year old, her parents, Chris and Erin, noticed something unusual—she woke up one morning with a puffy face. Concerned, they took her to Nemours Children’s Hospital, Delaware, where doctors quickly determined there was a kidney issue. What followed was a long and complex journey to find the right diagnosis. After weeks of testing, Dr. Tapia identified Piper’s condition as Denys-Drash Syndrome—a rare and serious kidney disorder with only about 250 known cases worldwide.
For the next seven months, Piper underwent treatment, but as her disease progressed, her family faced a difficult decision. To prevent the development of Wilms tumor—an almost certain outcome of Denys-Drash—it was decided Piper’s kidney would be removed under the care of Dr. Stephen Dunn. By December, she received a life-changing gift: a kidney transplant from her dad, Chris. “Dr. Dunn is a gift from God,” says Chris. “He gave our daughter the gift of life and is as calm and warm as any man we’ve ever met.”
“I cannot say enough great things about the entire team,” shares Chris. “The healthcare providers were the most wonderful, understanding, compassionate, caring people we’ve ever met. Cathy Ramage was with her every step of the way and remains involved in her care now that we live in Florida.”
Piper’s journey has taken her from Delaware to Florida, where she continues to receive exceptional care at Nemours Children’s Hospital, Florida. With Dr. Carlos Araya now part of her dedicated medical team, her health remains a top priority. She attends quarterly visits to ensure her kidney is functioning well and will continue receiving expert care at Nemours Children’s until she transitions out of pediatric care.
Now 11 years old, Piper is thriving. Thanks to the expert care at Nemours and the unwavering support of her family, she has been healthy for a decade since her transplant. Her continued care remains a priority, but her family feels confident in the future. “We hope to have many great years with this kidney and know that Nemours is keeping a close eye on it,” Chris says. To other parents facing similar challenges, her family offers this advice: “Trust your gut about your child’s care. A parent’s instincts are as strong and accurate as any medical test. That said, the healthcare providers at Nemours are as good as they come, and I would—and have—recommend Nemours to any parent who is struggling with a child’s healthcare issue.”
