Mitchell Herndon, of nameless genetic disorder
 

Teen had disease so rare it didn't have a name
https://www.google.com/url?rct=j&sa=...4p8Cbu4cxk-ysw

A teenager allowed the world to watch as a mystery disease killed him
https://www.google.com/url?rct=j&sa=...Ty8RLhV53YxwEw

A drug being developed to treat herndon arrived days late . . . although not an amyotrophic lateral sclerosis case, medical approach is plausible technique for amyotrophic lateral sclerosis cases. Washington State