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Touched (2015)
- phoe-krk 9y agoI 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 9y agoMihai 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).
- tcmb 9y ago> knowing that their time is about to run out Not to mock those with terminal illness, but everyone's time is running out and nobody knows how long they have left. If only we could all be more aware of that.
- Numberwang 9y agoI 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.
- phoe-krk 9y agoCorrect. Mods, please add (2015) to the title.
- sctb 9y agoUpdated. Thanks, all.
- deleted 9y ago[deleted]
- mattyb 9y agoYou're probably thinking of The Boy Whose Skin Fell Off: http://www.channel4.com/programmes/the-boy-whose-skin-fell-off http://www.channel4.com/programmes/the-boy-whose-skin-fell-o...
- Numberwang 9y agoYes, 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.
- jakosz 9y ago'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.
- telesilla 9y ago"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 9y agoSadly, Mihai passed away in 2015. His twin brother blogs at http://marius.sucan.ro/ http://marius.sucan.ro/ .
- DoreenMichele 9y agohttps://en.m.wikipedia.org/wiki/Epidermolysis_bullosa_dystrophica https://en.m.wikipedia.org/wiki/Epidermolysis_bullosa_dystro... 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.
- Angostura 9y agoIt might be nice to tag the headline (2015). A very moving read, however.
- star0zero 9y agoSuch 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 9y agoThanks 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?