How do you define "suffering"? From the story I don't see anything for what I would use such a strong word. Psychologically, some sort of "specialness" (and author tells us it's both bad, and good for a kid) is typical for many conditions which nobody would even call a disease, such as congenital poor eyesight. Physically, diabetes, or just a cosmetic defect which requires a series of operations could be way more challenging. Don't you think your reaction is just because this particular case is super rare, and scary for its unusualness?