Matt.Might.net has had many submissions to HN [1]. Professor Might pivoted from CS to medicine on account of his family's success figuring out what was wrong with their first-born son, Bertrand Might. Further context for this link is provided in dang's comment on a 2018 submission about the family's efforts to improve diagnosis and treatment for rare diseases: https://news.ycombinator.com/item?id=17962575
I read Cristina and Matt Might's blog posts [2] in 2010, when they were in the midst of their search for a diagnosis for their son. In 2012 they determined [3] Bertrand had a glycolysation disorder caused by inheriting two malformed copies of the NGLY1 gene [4] [5]. The family moved from Utah to Alabama for the University of Alabama's medical school [6], and probably also for the change of weather (Utah: substantial snowfall every winter. Birmingham, Alabama: 1 inch snow/year). They eventually decided the odds of their having a second child with Bertrand's NGLY1 disorder were acceptably low; their other two children are not affected by Bertrand's genetic condition.
Bertrand Might suddenly passed away about three weeks ago, not quite 13 years old.
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Growing up is like getting to the Moon and back. Most people make it to adulthood, but we all need help getting there. Parents are our Mission Control. Matt and Cristina found themselves in an Apollo 13 scenario [7] -- "Houston, we have a problem" -- soon after Bertrand's birth. One of Bertrand's symptoms was lack of tears. Matt posted a writeup after they pinpointed the genetic cause of Bertrand's condition: "My Son's Killer" [3].
Matt added 'precision medicine' to his undertakings. They rose to their occasion, found their answers and almost had Bertrand back to Earth ("A significant gene therapy trial is on the horizon" [8]). Suddenly losing their son is tough (but not entirely unexpected), as it is for all parents who outlive their progeny.
This brave family's story is an inspiration.
Dr. Might's linked post includes many ways to help honor Bertrand's legacy, and to help others.
Thanks to Bertrand, Dr. Might, and his family for bringing more light into the world.