
Skin too fragile to touch - signor_bosco
http://stanmed.stanford.edu/2015summer/the-butterfly-effect.html
======
ovi256
I would just like to point out that Mihai Sucan, a wonderful developer that
worked on the Mozilla Developer Tools, passed away in April of this year due
to the skin cancer this disease often leads to. I had the privilege of knowing
him.

You can read his blog here:
[http://mihai.sucan.ro/mihai/blog](http://mihai.sucan.ro/mihai/blog)

His twin brother is still fighting.

I am very glad to see that a great medical research center such as Stanford is
doing work to heal this disease. If you want to make a donation this year,
please consider them. Mihai also wrote about donating in his last blog post.

~~~
ams6110
Good thing we didn't kill him in the womb or in the cradle then, as others on
this page are advocating. His life was sadly short, but we are better for
having had him.

~~~
doomrobo
To maybe phrase the other comment's concern more formally, the argument of
whether or not to abort is filled with case-by-case circumstances, and saying
that humanity is better for the contributions of a person without taking into
account the extent of the person's or their parent's suffering is far too
reductive to stand as an argument.

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MathsOX
Sick Children's Hospital in Toronto is a global leader in research and the
center for all of Canada's EB patients. The EB program is the only one where
ALL members must rotate (i.e - take time away from EB patients). To see the
toll on all involved is devastating; partly because the realities for EB
outcomes are still stark.

Sick Kid's developed an iPhone app - which is actually quite informative to go
through on your own - to help create more structured outcomes:
[http://www.sickkids.ca/Research/iscorEB/index.html](http://www.sickkids.ca/Research/iscorEB/index.html)

If you'd like to tear up a bit, here's an article about The Butterfly Girl -
one of the stars at Sick Kids whose strong attitude and will I can only marvel
in amazement at:
[http://www.thestar.com/news/canada/2014/07/01/butterfly_pati...](http://www.thestar.com/news/canada/2014/07/01/butterfly_patient_hopes_to_inspire_others_with_epidermolysis_bullosa_a_rare_skinblistering_disease.html)

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octatoan
Please, let's not turn this thread into a big slanging match.

> "“One child came in costume as a mummy, covered in bandages. During the
> evening, some of the blood from his wounds began to seep through the gauze,
> and those who didn’t know this child had EB were remarking about how
> realistic the bloodstains were. It’s impossible for me to imagine what it’s
> like to be the parent of that child.”

:(

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lectrick
Very difficult to watch the embedded video. But of course I did, as I need to
know everything. Was brought to tears though, FYI.

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JesperRavn
Euthanizing children with this condition at birth should not only be legal,
but encouraged. Because of the enormous suffering they experience.

~~~
bennettfeely
Anyone who tries to eliminate suffering by killing the "sufferers" is
establishing a horrific trend. It is not for us to decide who has a life worth
living and who doesn't, and we certainly wouldn't want someone else making
that decision for us.

~~~
Sharlin
Abortion is already both legal and morally acceptable in many places,
especially in cases the fetus has or is known to develop a debilitating
untreatable disease. What if a test were to be developed to detect this
condition before the second trimester or whatever the legal boundary is?

~~~
drdeca
I don't think moral realism / moral universalism would claim that whether
something is morally ok depends on where (I.e. in what community) it is.
Instead, I think "considered morally acceptable" might be an alternate
phrasing which doesn't say (much of) anything about meta-ethics.

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Immortalin
Have anyone tried applying machine learning to this? A quick Google search
turned up few results.

