
Touched (2015) - zuzuleinen
http://mihai.sucan.ro/mihai/blog/touched
======
telesilla
"Medical research campaigns do not really go viral. We do not get a ton of
people donating $5. You should consider donating as much as you are
comfortable with."

Perhaps today we can make a difference, Mihai. I wish you much happiness and
joy each day you have.

[https://www.ebresearch.org/donate.html](https://www.ebresearch.org/donate.html)

[http://www.sohanaresearchfund.org/donate/](http://www.sohanaresearchfund.org/donate/)

[https://www.debra.org.uk/donate/intro](https://www.debra.org.uk/donate/intro)

[http://www.debra-international.org](http://www.debra-international.org) (for
donations via bank)

~~~
shock
Sadly, Mihai passed away in 2015. His twin brother blogs at
[http://marius.sucan.ro/](http://marius.sucan.ro/) .

------
phoe-krk
I have some unexplainable kind of respect and amazement towards people who
stay human, honest, communicative and talkative like that, despite (or perhaps
because of) knowing that their time is about to run out. They avoid dying
_before_ their physical death. They seem not to submit to despair.

~~~
dangoor
Mihai was an amazing person to work with. Super sharp, positive and
productive. His whole life was an example of how someone can live and make the
most of their situation despite being given challenges that most of us don't
face.

I just thought I'd mention that because what you see of him from the end of
his life seemed to me to always be present (I worked with him for a couple of
years at Mozilla).

------
DoreenMichele
[https://en.m.wikipedia.org/wiki/Epidermolysis_bullosa_dystro...](https://en.m.wikipedia.org/wiki/Epidermolysis_bullosa_dystrophica)

[https://en.m.wikipedia.org/wiki/Epidermolysis_bullosa](https://en.m.wikipedia.org/wiki/Epidermolysis_bullosa)

TLDR: It's a genetic disorder best known for causing fragile skin. It also
predisposes people to certain forms of cancer, which is apparently how the
author died.

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Numberwang
I saw a documentary once about a man who had that disease, I can't recall its
name now. Truly a horrible disease. I hope science can make progress on it in
the coming years.

Btw, this article seems to be from 2015.

~~~
mattyb
You're probably thinking of The Boy Whose Skin Fell Off:
[http://www.channel4.com/programmes/the-boy-whose-skin-
fell-o...](http://www.channel4.com/programmes/the-boy-whose-skin-fell-off)

~~~
Numberwang
Yes, that's the one.

One of a very short list of films that remains with me through life that I
think back to every now and then.

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jakosz
'Some conclusions' section reminds me of a short piece PG has once written on
regrets of the dying. I find it amazing how consistent some of the points are
-- happiness is your choice, cultivate friendships, say what you think and
don't obsess with work.

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star0zero
Such a horrible and sad disease. I was introduced to it through (surprisingly)
a Jeep club affiliated charity in the United States called Crawling for Reid.
A few thousand off-road enthusiasts get together in South Pittsburg, TN to
have a good time and raise funds for a small child with this unfortunate
affliction. $120,000 USD was raised last year with record attendance and this
year is set to raise even more. In particular, as I understand it, this
charity benefits the little boy (Reid), primarily, as well as ongoing
research. If you feel so inclined to donate, you may do so here
[http://crawlingforreid.com/donate/](http://crawlingforreid.com/donate/).

~~~
sizzle
Thanks for sharing link. This mostly goes to just one person? I would like to
donate to fund research to help the most people benefit, do you know the
foundation?

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Angostura
It might be nice to tag the headline (2015). A very moving read, however.

