Rylee Supple seemed like a perfectly healthy baby when she was born in August 2016. But after a few months, her parents, Amy Jaeger and Robert Supple, realized something wasn’t right: instead of making normal baby movements, like kicking and grasping, Rylee’s body would shake and spasm.

Jaeger and Supple were worried. They took Rylee to a doctor for a slew of tests, which all came back negative. And in the following months, Rylee got even worse. She couldn’t raise her head or sit up like other babies her age, and she began sweating profusely.