Too risky to proceed, too beneficial to shelve: Astellas’ XLMTM story

For the first two years of Joshua Jacob Gonzalez’s life, his parents, Javier and Jessica Gonzalez, suctioned saliva from the back of his mouth every five minutes. Miss one suction, his airways could clog and he could die.

So, a few weeks after treatment, it was the first thing Jessica noticed. She jostled Javier, who was asleep in a hospital chair at the National Institutes of Health, awake. When was the last time he had suctioned JJ? An hour had elapsed, they realized, and their boy was breathing fine. 

It was the beginning of a chapter that would prove as bittersweet for the Gonzalezes as it was miraculous.