Snow Family

Shipley "Ship" Snow was born on November 24, 2024, after an uncomplicated pregnancy, but he arrived struggling to breathe. The NICU team acted quickly, and a knotted umbilical cord around his neck seemed to explain his distress. When his breathing issues began affecting his heart, doctors placed him in a medically induced coma to give his body a chance to recover. Over the next several weeks, Ship’s condition was unpredictable. Four weeks in, a night nurse noticed low muscle tone and unusual movements, prompting a neurology consult. Genetic testing revealed PURA syndrome—a rare neuromuscular disorder with fewer than 750 known cases worldwide. Even the specialists at Primary Children’s had never treated it. His parents became advocates, connecting with other PURA families for support and guidance. After 92 days and two hospitals, Ship graduated from the NICU, thanks in part to a treatment plan shared by a PURA mom and Pediatric Neurologist. Though the journey is filled with unknowns, Ship’s resilience inspires his family daily. They continue to celebrate his progress and share his story to raise awareness.