When Shine entered the world six weeks early, his mom expected a quick delivery and a healthy newborn. Instead, the room fell silent. Doctors gently told her that her baby had been born with profound physical anomalies: his eyes and mouth were sealed shut, his hands and legs were webbed, and his nostrils were closed. Shine was urgently transferred to UC Davis Children’s Hospital, a Children’s Miracle Network hospital, where a neonatal team worked to save his life. He was diagnosed with Popliteal Pterygium Syndrome, Bartsocas-Papas type, an extremely rare genetic condition caused by alterations in the RIPK4 gene which often leads to death before or shortly after birth. Shine was also diagnosed with a complicated disorder called ectodermal dysplasia. In his first days of life, surgeons created airways so Shine could breathe, placed a feeding tube so he could eat, and treated complications of prematurity. His mother, who developed life-threatening preeclampsia, was admitted to the intensive care unit herself, but never stopped fighting for her son. At just 2 years old, Shine underwent a double leg amputation to give him increased mobility. When he received his first prosthetics, he took off running and hasn’t stopped since. He now trains for triathlons and participates in adaptive sports with pride. To date, Shine has had 22 surgeries, including more than a dozen craniofacial surgeries that have allowed Shine to breathe and eat on his own. He also had life-changing hand surgeries to give him two functional fingers on each hand. Through every challenge, his UC Davis care team has provided compassion, innovation, and hope, ensuring that Shine continues to defy medical expectations. Now 8 years old, Shine radiates joy and determination. His smile, strength, and spirit are a true testament to the expert and innovative medical care he’s received.
UC Davis Children’s Hospital helps champions like Shine.
Every Children’s Miracle Network® hospital has a local Champion with an incredible healthcare story. Read more about their journeys, the specialized care they received and the difference it’s made in their lives.
Every donation helps kids like our Champions get the care they need at their local children’s hospital. From funding specialized equipment to advanced research and child life programs, your support helps these hospitals deliver the best possible care for all kids and families in their communities.
