thrive
Measuring Life in “Inchstones” Samuel’s Story W hen Katie Martinez was 35 weeks pregnant, she called her doctor because something didn’t feel what Katie calls “inchstones,” earned through years of effort. Life today still requires structure and BY AMANDA MILLER
The diagnosis explained a lot, but it also changed everything. Prader-Willi affects how the brain communicates with the body, espe- cially around hunger, muscle tone, sleep, and regulation. In Samuel’s case, it meant severe feeding difficulties as a newborn and long- term developmental challenges that would require ongoing care. The early years were defined by specialists, therapies, and constant adjustment. Feeding therapists, neurologists, and developmental teams became part of everyday life. Katie describes that time as deeply isolating, watching other families leave the hospital with their babies while she stayed behind, living day to day without answers or timelines. But slowly, progress came. Support also came early from the Prader-Willi Syndrome Association USA, an organization that connected Katie with other parents, medical guidance, and a community that understood what life with this diagnosis really looks like beyond the hospital walls. Samuel learned to eat by mouth. He learned to walk at two and a half. He began speaking, singing loudly, and greeting his younger brother every morning with a joyful, “Hey brother.” Each milestone felt enormous,
right. Her baby, Samuel, wasn’t moving the way he usually did. That call quickly turned into an ultrasound, then hospital moni- toring, then an overnight stay she didn’t expect. What began as precaution turned into growing concern. At a routine visit at 37 weeks, things escalated again when doctors discovered Katie had low amniotic fluid, and she was told she needed to deliver that day. Samuel was born by C-section, but instead of the immediate relief Katie had imagined, there was concern almost right away. He had low muscle tone, a faint cry, and struggled to feed. Within hours, he was in the NICU. What was supposed to be a short hospital stay turned into seven weeks of uncertainty, specialists, and waiting for answers. In those early days, Katie was learning how to be a mother in a hospital room filled with moni- tors and questions no one could fully answer yet. Samuel wasn’t feeding well. He needed a tube for nutrition. And even the medical team was still trying to understand what was going on. Eventually, genetic testing brought clarity: Prader-Willi Syndrome.
vigilance, especially around food safety and access. The condition affects hunger regula- tion in a way that requires constant aware- ness, planning, and advocacy in school and community settings. But Katie’s focus is not only on what Samuel needs, it’s on who he is. He is verbal, affectionate, social, and deeply bonded with his brother. And he is learning and growing in ways that don’t always look typical, but are deeply meaningful. Along the way, Katie has become an advocate, not just for Sam, but for awareness. She’s learned to speak up in medical settings, push for understanding, and stay connected to the broader community through orga- nizations like the Prader-Willi Syndrome Association | USA (PWSA), which continues to support families navigating the same path. Because while the diagnosis shaped their lives, it didn’t define Samuel. What defines him now are the small victo- ries, the daily routines, and a family that has learned how to build a life around progress that comes one “inchstone” at a time. To learn more about PWSA, visit pwsausa.org.
16 AUGUST 2026 | BRPARENTS.COM
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