Brave together: Some parenting is harder than others
by Rachel Reeves Jessica Patay can easily return, in her mind, to the night in the summer of 2003 when a doctor called with her newborn son Ryan’s diagnosis. She and her husband, Chris, had returned to their Rancho Palos Verdes home a week earlier. They’d been in the hospital for a month, as doctors ran tests to understand why Ryan wasn’t crying or waking up to eat. Though they still had no answers, they decided it was time to return to their two-year-old son, Luke, whom their parents had been watching. Chris, a partner in a law firm downtown, had to get back to work. They took the feeding tube and their newborn home and waited for a call. A week later, the diagnosis was delivered gently and matter-of-factly: Ryan had Prader-Willi syndrome, a genetic disorder with a strange collection of symptoms, including an intellectual disability, behavioral struggles, anxiety, an insatiable appetite, and short stature. He would need a geneticist, a gastroenterologist, a urologist, a pulmonologist, and an endocrinologist, among a slew of other doctors. “You can’t even believe a disorder like this exists,” Jessica said in an interview. What happened next would change the trajectory of her life…
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