Will throw this out as a general human-interest story - it's about my oldest son, who is now a 17-year-old high school junior.

https://www.vype.com/overcoming-impossible-odds-a-story-of-perseverance

The writer originally worked this up for their school newspaper, but it got wider publishing yesterday.  I wasn't much worried about it going public.   When this happened to him, we got a lot of strength and good advice by searching and finding information on people with a similar condition.  Many of those were happy to answer our cold calls and discuss.  Hopefully, we can do the same for someone else.

Living through this condition, I'm obviously hoping that he might stay closer to home for college in 18 months so this might mean Texas A&M, UT, University of Houston, SMU, or North Texas.   Probably not quite the student to get into Rice (although he's solid).  He was a semi-finalist to feature in this year's Bear Bryant Awards and speak to that group, and that could still happen next year when he's a senior. 

17 months and counting with no VT's.  He even got back into decent shape and hit over .400 (for Mick:  that's a good thing) in baseball this fall.  Has maintained good grades and got a job this summer that he works into his schedule.  And still plays in the top-level orchestra at high school (a pretty rare sports/arts double that has me feeling proud).