I just found this looking for something else.
The new trend of young dying persons chronicling their terminal illnesses online, prominent example, former aspiring Canadian actress Eva Markvoort, who died at age 25 this past March of cystic fibrosis after her body rejected one double lung transplant, and awaited another.
She maintained a blog, http://65redroses.livejournal.com/
She the subject of the documentary "65 Red Roses" (her childhood mispronunciation of her disease), which had ended on the hopeful note of the lung transplant that later ironically ended up hastening her death. It is heartbreaking to see pictures of her looking and feeling so much better at the film's premiere, knowing now that it was only to be a brief rally.
Eva also had posted numerous videos posted on Youtube.
This is her final farewell video, recorded about 6 weeks before she passed away:
http://www.youtube.com/watch?v=GjinOU7LR0k
Sad sad sad sad sad.
The "65 Roses" video was shown several times on Polish television, which made her something of a celebrity in Poland, and she was even interviewed by a Polish TV crew when they were there for the Vancouver Olympics.
One could argue she was exploiting herself and her family's pain but what of it? She's still dead, dead too soon like many other young people with terminal ailments, after suffering terribly, neither of which of course should have to happen to anyone.
Indeed, some are now comparing Eva's courage in the face of her fate to fellow Canadian, the late Terry Fox.
She raised awareness and funds too, though I don't know, they keep throwing money at these foundations and I wonder if there will ever be a "cure" or "prevention"--- Maybe inventing treatments that make these fatal conditions into chronic but survivable situations is the best to hope for?
More articles:
http://www.cnn.com/2010/HEALTH/04/27...ess/index.html
http://www.vancouversun.com/health/M...741/story.html
http://en.wikipedia.org/wiki/Eva_Markvoort