On Aug. 9, Holly Uchtman and her 7-year-old son Zyler headed to their weekly appointment at Mercy Hospital in Springfield. Zyler has Duchenne muscular dystrophy, a rare, terminal disease that causes muscles to weaken and eventually stop working. For two years, Zyler had been receiving eteplirsen, gene therapy that helped his muscles keep their shape.
But that day, there was a surprise on the other side of their journey. The state had removed Zyler from Medicaid, which pays for his nearly $40,000-a-week treatment. They were turned away, and he missed his appointment.