
Hunting down my son's killer (2012) - Tomte
http://matt.might.net/articles/my-sons-killer/
======
Tomte
Matt Might is now leading a medicinal institute at the University of Alabama.
That‘s an impressing cross-transfer from computer science.

This text is one of the texts I have read most in my life. Not only is it
emotionally powerful, but I have spent weeks translating it into German.

At one time, Matt asked on Twitter if there was a German willing to translate,
there was a deadline and it was important (for reasons he explained later in
personal mail).

I offered my help, with the caveat that I‘m neither a professional translator,
nor with any medical background. I wasn’t totally inexperienced, I had
translated a few things here and there, like Mark Nottingham’s Caching FAQ.

But boy, was that text a challenge! I always wanted to write that up, but by
now my memory has faded a bit.

Quite stressful, but it felt more meaningful than translating a technical
text.

And I learned a few things along the way. And I found several errors in the
original. I had read the text many times before, but only when translating,
you‘re really struggling with the text on a fine-granular enough level to
actually notice things. Like when you look up the list of ultra-rare genetic
conditions in some medical research database I‘ve never heard of before —
because (a) Wikipedia doesn‘t have an article for all of them, (b) if so, the
German-language Wikipedia doesn‘t, and (c) some of those have names in German
that are not straight translations of the English name — you may notice that
Matt listed one or two diseases twice, where the disease has two common names
or aliases.

In the end I wonder if anyone really cared about the translation, because the
original reason for wanting a German translation kind of fizzled out, in my
perception.

Still, it was a cool time.

------
vesrah
I enjoyed the read, here is a follow-up article -
[https://www.newyorker.com/magazine/2014/07/21/one-of-a-
kind-...](https://www.newyorker.com/magazine/2014/07/21/one-of-a-kind-2)

------
purplerabbit
My girlfriend's lab at the University of Utah just published a paper on this
disease a few weeks ago:

[https://academic.oup.com/hmg/article-
abstract/27/6/1055/4810...](https://academic.oup.com/hmg/article-
abstract/27/6/1055/4810719?redirectedFrom=fulltext)

Biological pathways are insane... I'm really impressed with what's being
uncovered in this field of research.

------
ptspts
The article has a misleading, sensationalist title. In fact there is no
murderer and there was no violence.

The article is about the author's journey of diagnosing a genetic disease in
his son.

~~~
danso
"Killer" does not necessarily denote murder nor violence.

~~~
ptspts
Indeed, ``killer'' has the other (nonviolent) meaning: cause of death,
fatal/deadly illness, destroyer, threat to life, menace, plague, scourge,
peril.

The author of the article could have easily used any of the above less
ambiguous words in the title, but he didn't. Hence I formed the opinion that
the title is sensationalist.

~~~
danso
Not everyone agrees that “destroyer” and “scourge”, etc, are any less emotive
of words. In fact, they end up being suggestive in unnecessary ways.

------
bassman9000
[https://rarediseases.info.nih.gov/diseases/12315/deficiency-...](https://rarediseases.info.nih.gov/diseases/12315/deficiency-
of-n-glycanase-1)

------
Tomte
Also interesting:
[http://matt.might.net/articles/tenure/](http://matt.might.net/articles/tenure/)

(That‘s a repost, because the Quora question has been deleted)

------
eruditepanda
I had the opportunity to interact with Prof. Might when I was in grad school;
hearing about his son and the struggles has been heart wrenching at times,
more so after hearing him speak about it in person.

