
Aaron Winborn: Special Needs Trust - famoreira
http://aaronwinborn.com/blogs/aaron/special-needs-trust
======
jnoller
It doesn’t mat­ter what com­mu­nity he is part of, nor who he is. He’s a
hacker, a father of two beau­ti­ful girls and a hus­band. He’s being robbed of
his life, and his daugh­ters robbed of their father.

What matters is we can help. All of us — some of us (me) have been lucky
enough to get help and sup­port when we needed it most from peo­ple we didn’t
expect it from.

We can help him; we can help his fam­ily. Even if only a lit­tle, and even
though we know what the future will hold. So let's just do it.

Skip the squabbling over politics; national healthcare, etc. It _doesn't
matter_ \- _what matters is him and his family, right now_.

~~~
nicksergeant
The most thoughtful comment unfortunately buried underneath HN bull-fucking-
shit (<http://news.ycombinator.com/item?id=4229330>)

This might be the straw for me. Fuck this place.

~~~
nicksergeant
I stand by my comment, negative votes and all.

I'll take a few more negative votes for this comment, please...

~~~
lotharbot
How can you go from complaining about HN bull in one post to begging for
downvotes in the very next one?

~~~
nicksergeant
I was being ironic ;)

------
ap22213
I've heard of several cases of programmers getting ALS. This seemed
statistically unlikely, since the ALS site stated that only 5 in 100,000
acquired the disease.

Then, I googled "programmers ALS" and found this study:
<http://aje.oxfordjournals.org/content/162/12/1146.abstract>

It suggests that programmers do have higher risks. (Still, keep in mind that
the study is small, and even if there are increased risks, the odds are still
low.)

------
powertower
More info on ALS: <http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001708/>

If I ever get something like this, or anything that eventually "locks-me-in",
or something that destroys my mental faculties, I'm going to kill myself
before the worst of it happens, around the time when I'm still able to do so.
It's the only decent thing to do for yourself and the others around you.

Your opinion might be different.

~~~
gms7777
What I think I would personally do wouldn't be too different. However, I think
making statements like "It's the only decent thing to do for yourself and the
others around you." is awfully harsh and judging to people who are actually in
the situation. It seems to imply that they are somehow selfish by not ending
their lives. Its important to remember that they are in the situation and you
are not and therefore they have an understanding of their choices that you do
not.

Anyway, its also relevant that most life insurance has a suicide clause.

~~~
gwillen
My understanding is that voluntary withdrawal of artificial ventilation is not
an uncommon choice for locked-in ALS sufferers, and does not count as
'suicide', but as 'death from ALS'.

EDIT: I do agree with you 100% though.

------
mtraven
Hackers may be interested in the story of Jaimie Heywood, who when his brother
was diagnosed with ALS started his own garage-biotech company to try to find a
cure. Sadly the brother died but the effort lives on and Jaimie went on to
start PatientsLikeMe.com.

<http://en.wikipedia.org/wiki/James_Heywood_(chief_executive)>
<http://westcityfilms.com/smsf.html>

~~~
jaylevitt
See especially Jamie's TEDx talk. "Wouldn’t it be great if the technology we
used to take care of ourselves was as good as the technology we use to make
money?"

[http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...](http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html)

And to bring it back full circle to HN: Once original Basecamp sunsets, we
think PatientsLikeMe has the oldest continuously-running Rails app; the oldest
commits are from 2005, running Rails 0.5.

------
vecinu
This is really sad news and I will donate to his Trust fund but I can't help
but feel strange knowing that I am donating to a fellow programmer. I see
posts like these on Facebook and other collaboration sites and I rarely even
bother reading the articles.

I wish we could take care of all the sick and elderly equally but such is
life. Instead of blaming it on the government, the system, society or anyone
else, I suggest we donate to the cause to help this man live as well as he
can, while he still can.

Nobody deserves to be robbed of their life like this.

~~~
unreal37
What about people who are sick like this but are not famous programmers? Who
will donate to them?

Government exists, in part, to share the costs of society among all its
citizens. Roads, transit, military, and in most countries of the world,
healthcare.

~~~
vecinu
This is exactly what my point was about. Perhaps I didn't express myself
properly.

------
benjaminwootton
I posted another sad story about a felow developer earlier today. This guy was
going in for a double amputation today.

<http://twitter.com/iwarshak>

It's easy to say but I'm going to really try and keep a sense of perspective
the next time I'm complaining about something.

~~~
saturn
> Christian, husband, father, software developer. In that order.

Maybe this is a horrible thing to say but when I read something like that I
just completely turn off. Religious fanatic sick? Their invisible space god
can take care of them! I love how he put his stupid superstition not one, but
two places ahead of being a father. That's really cute.

I donated to the Python programmer with ALS but I think I'll let Jesus help
this guy.

~~~
jswinghammer
In most churches the advice given to men and women in terms of prioritizing
your life is: God, spouse, family, work. I realize that you think that his God
isn't real but that really stops you from ever caring about someone? If your
father had cancer and believed in God would you speak to him in this way? Why
go through life being so harsh?

------
unreal37
When the site is back up, I'll definitely donate as this is a terrible thing
to happen to anyone. Not being able to hug your daughter or turn the pages of
a book you are reading to her must be torture.

It does bring up the discussion of how people with low chances to live need
$100,000s of care in the final months of their life. Must be tough to bankrupt
yourself and your family that survives you knowing that there is not much you
can do to avoid fate. But people myself included would do anything to survive
just a few more months.

------
s_henry_paulson
Sadly before I even opened the article, I knew this was going to be the result
of the lack of a proper healthcare system in the US. :(

~~~
einhverfr
Why is it that when I suggest we emulate Canada's system (which is province-
by-province single payer) the Democrats accuse me of being a Ron Paul right-
winger (Nooo... not the States!) and the Republicans accuse me of being a
socialist (Nooo... not single payer!)?

Not only is the US healthcare system broke and broken, but nobody in power is
willing to imagine a solution that might work better (probably because such as
system would require tackling the major corporate interests across the board,
like big pharma) :-( I wouldn't be optimistic that we'll get things fixed.

~~~
preview
The issue is whether a state-by-state single payer system would be universal.
It would not be in the US--the Republican states would never enact it. How
would Canada's system react if Ontario had single payer but British Columbia
did not?

~~~
einhverfr
Actually Canada has had issues with provinces not coordinating medical issues
very well. They are actually less centralized than the US is. One of the
reasons why SARS hit Ontario so hard was that there was no equivalent to the
CDC nationally or at that time in Ontario.

But for the US, if you sent things to the states, coverage could follow
residency, and states could decide the level of coverage they wanted to
provide (coverage varies significantly between Canadian provinces btw).

The big problem for the states is you can't do it as long as Medicare is fully
federal and Medicaid is so heavily regulated by the federal government. You'd
probably have to hand these programs to the states first.

------
JTxt
I met Aaron a couple years ago at a DrupalCamp media module sprint. He's been
generous with his time and efforts to help others. I'm sad to see him struggle
in his latest video. I hope the best for him and his family.

------
moondowner
There's no PayPal in my country (I use Google Checkout and Skrill). If there's
an option to donate in a different way I'd do it asap!

~~~
s_henry_paulson
You don't need a paypal account.

Click the one-time donation button. Then click the 'Continue' link where it
says "Don't have a paypal account?"

Then complete your donation and you're done.

------
rdl
Disability insurance seems like something everyone should get if they possibly
can -- if you're an entrepreneur and often move jobs, it may be worth having
personal coverage vs. relying on employers, since they change and may have
inconsistent coverage. Probably the most important coverage after basic health
insurance and auto coverage (if you drive).

I'm kind of on the fence on long-term care insurance, though (independent of
disability). It is dramatically more expensive, basically prepaid nursing
care, and depends greatly on your assumptions about the cost of health care
and general inflation.

------
j-b
I have two daughters of my own who are roughly the same age as Aaron's and
it's crushing to think about how those girls will be affected by losing their
Dad. Donated..

------
ed209
text only cache
[http://webcache.googleusercontent.com/search?q=cache:BZM_fc5...](http://webcache.googleusercontent.com/search?q=cache:BZM_fc59iG8J:aaronwinborn.com/blogs/aaron/special-
needs-trust&hl=en&prmd=imvns&strip=1)

~~~
agumonkey
the full version cache includes donation links

[http://webcache.googleusercontent.com/search?q=cache:BZM_fc5...](http://webcache.googleusercontent.com/search?q=cache:BZM_fc59iG8J:aaronwinborn.com/blogs/aaron/special-
needs-trust&hl=en&prmd=imvns&strip=0)

~~~
ed209
I was having trouble loading the full cached version, figured images were the
cause. Thanks for that though, full cache seems to be loading ok now.

~~~
agumonkey
You're right, text-only loads faster. I whish I could link paypal directly but
it looked unsafe to do so.

------
aaronwinborn
I want to thank everyone for their ongoing support. I was surprised, pleased
and humbled to find my post on Hacker News. I love the Open Source community,
and am proud to be part of it.

------
kiba
This remind me of another programmer who got ALS: Hal_Finney

------
socialist_coder
I thought this was going to be an article about "special" needing "trust",
which seems like it might be interesting.

------
vy8vWJlco
[http://www.reuters.com/article/2011/03/16/us-vitamin-e-
users...](http://www.reuters.com/article/2011/03/16/us-vitamin-e-users-show-
lower-als-risk-idUSTRE72F9B320110316)

<https://www.youtube.com/watch?v=qMYIJlmeSFM>

------
shin_lao
I hope this guy won't have a problem with PayPal should his fundraiser work.

------
mindcrime
And here we go again with the title changes. Dude, whoever you are, would you
please f%^#ng stop? This is _not_ helping. Saying "Drupal Developer" clearly
lets anybody reading this site know that the person in question is "one of
us." Changing it now means that the only people who will pay attention are the
ones who happen to know who Aaron Winborn is.

~~~
reneherse
Original title: "A Drupal Developer is Dying and Needs Your Help."

The new title reduces the information and context about the article by several
orders of magnitude, which is a tragedy given the gravity of the situation.

To all who read this comment, please upvote the OP so that it stays on the
front page longer and signals "must read" with its large number of upvotes.

This heavy-handed re-titling of HN posts has got to stop. If any incident can
clearly demonstrate why, this is it.

~~~
jellicle
This is exactly correct. Information content in headlines is important, and
clearly the moderator is incompetent at this role. You have to tell people why
they should care, and the target page title probably is NOT good at that. In
99% of cases, the target page title will be a bad title on HN.

If the moderator disliked the direct appeal for aid in the original headline
(I speculate, since he has not deigned to defend his editing), a proper title
would be something along the lines of "Drupal developer has ALS, appeals for
help". If Winborn is better known, you could go with "Drupal developer Winborn
has ALS, appeals for help". If he's very widely known, you can assume most
readers know who he is and go with "Aaron Winborn has ALS, appeals for help".

This conveys all the information needed for readers to evaluate the link,
without being a direct emotional appeal.

I'd be happy to give the HN moderators a class in editing if they like.
Editing is a learnable skill. Or, more likely, the HN moderators can continue
fucking it up.

~~~
evolve2k
Mods need to take account of context when reviewing titles.

The context the original title in the blog post is totally different from here
on HN hence the desirability of a different title. It's just good UX to take
into consideration the different end user.

