Eleven Years of Misdiagnosis

One boy’s battle with a rare disease reveals common struggles among patients worldwide

Alyssa Scalia’s infant son, Connor, had gray skin. Her husband, Tom, didn’t see it, but Alyssa didn’t think she could be imagining it. Doctors assured her that she had nothing to worry about; babies just change color a lot.

Similar reassurances followed when Alyssa noticed that Connor failed to hit developmental milestones like walking and talking as quickly as his older brother T.J. had. When Connor finally did…