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Aaron Winborn: Special Needs Trust (aaronwinborn.com)
361 points by famoreira on July 11, 2012 | hide | past | web | favorite | 87 comments

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.

It doesn't matter what community he's a part of? Do you know how many Africans you could save from suffering and an early death for $100,000/year?

Lots of people die, lots of people have terrible diseases. And I sometimes cry when I read these stories. The amount of hurt in this world unimaginable.

But most poeple don't get my money.

Most also do not have a trust fund.

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.

Hold on there. While it's certainly unfortunate that the top thread ended up as a debate of internal HN issues, there is within it a legitimate desire to help. When I saw that this was the intent of the parent, I posted in that thread so that anyone scanning the top of the page would regain the context needed to see the gravity of the original article.

To be fair, it looked (to me, anyway) to be out of genuine concern that the change to the title would reduce the interest of people on HN who could see the post and maybe help out Aaron.

I stand by my comment, negative votes and all.

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

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

I was being ironic ;)

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.)

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.

My opinion is similar, but... I've taken care of patients with ALS, and trying to figure out when you're in window of time between functional and nonfunctional is just about impossible. Not to mention that these patients and families have amazing capabilities to adapt to new realities, so as their function decreases, they adapt and thoughts of suicide seem ridiculous.

Not all patients, of course. I just felt a need to respond to the 'decent' part of your comment. The only decent thing to do is what you think is right.

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.

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.

I doubt it's such a simple choice to make when you have a wife and two young daughters. Also, consider rephrasing to avoid categorically labeling all ALS patients as "indecent".

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

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?"


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.

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.

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.

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

>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.

We can do both.

I'm a programmer and have two young children. I can't help but be moved to donate as it is relatively easy for me to see myself in his shoes.

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


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.

> 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.

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?

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

As an atheist, I find your comment severely distasteful. I wish I could downvote this many times more than just once.

If it said "Human striving to be a good person, husband, father, software developer. In that order." would that make any difference to you? Because that's what all the moderate christians I know see their faith as meaning first of all.

I think you may have mixed me up with someone else. I have never uttered those words in that order, in public or in private.

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.

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. :(

Could we skip the political discussion about this for now? HN really isn't "about" politics, and I have a feeling that the crowd here is just as divided as the general population when it comes to debating what should be done about healthcare. Us bickering about it here isn't likely to lead to any change, IMO.

No, you're exactly wrong.

People who don't support health care for all need the outcome of their preferred policy position rubbed in their face as often as possible. And it's this: a man is begging over the internet for enough money to live his remaining years in what comfort he can, while hopefully destroying his family's future as little as possible. And what of the people who aren't drupal devs, or don't have an emotional connection with a community of people? They're just sol.

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.

Let's stop fantasizing about the Canadian health care system. I had family with ALS and the expensive equipment and home modifications required to cope with the later stages of disease aren't covered in Canada, either - except next-to-no Canadians have private health insurance, so instead of just some ALS patients being in this man's situation, almost all of them are.

Instead of editorializing, you should donate to the man's fund, or your local ALS Society - they do incredible work almost completely unappreciated by the broader public.

> Why is it that when I suggest we emulate Canada's system

No. I left the country because of their health care system, and came to the US because of the health care my son would have access to.

In the first 2 weeks here, he had more care for autism then the entire length of time we were up in Canada (which included the more than year long struggle to get him diagnosed properly and get him help.

And he suffered for it. All because of Canada's, as well as Quebec's, health care policies.

I will not allow my son to suffer the way he suffered up there. That system, and the participants were, in short, abusive (and yes, I mean exactly that word).

I don't know why more people don't talk about this. People rave about Canadian health care, but seem to ignore the fact that many, many people with serious illnesses come to the US for treatment because they can get care here that they are apparently unable to get in Canada. Of course, this is going to be limited to the very wealthy or people with private insurance (assuming it covers treatment abroad - I really have no idea).

I don't doubt that Canadian health care is fine for everyday needs, but pretending it will solve everyone's problems is ignoring reality.

I am not saying the Canadian system is perfect. However it's worth noting that they cover everyone for the equivalent of what we pay in the US for Medicare and Medicaid alone. We can afford to do better. Unfortunately often we don't.

If we block-granted the money for Medicare and Medicaid to states, they could choose to mimic the Canadian system with no tax increases, or they could choose to do something different. But what I really like about the Canadian system is that the control is localized. This is what gets me labelled as a right-winger for proposing it.

Edit: I want to apologize if I come across as harsh. This topic is near and dear to my heart. So, please understand that my tone is not directed at you.

> However it's worth noting that they cover everyone for the equivalent of what we pay in the US for Medicare and Medicaid alone.

Everyone is covered, but not all medical conditions are covered. Yeah, if you break your leg, it's great. Having a child? Peace of cake. You don't even see a bill. Things just happen. In that way, it's nice. But when it's serious? No. Serious conditions that require years of effort, or major surgery? It falls down.

And the quality of care is below what we've found in the US.

It looks pretty on paper. My wife was a big fan of the Canadian Health Care system, before she had to rely on it. She feared the US system, until she experienced first hand how it could help.

No system is perfect, but do not imagine for a moment that the Canadian system is in any way a better way. I am serious when I equate what Quebec did to my son as nothing other than pure abuse.

Ok, so here's what I mean by emulating the Canadian system:

You have some sort of a national commitment to fix the health care system. We can discuss the format of that national commitment and the role of the federal government (there would have to be some role particularly for the elderly who may retire somewhere other than where they worked). Then we leave it to the states to iron out the details.

That's what I want to see emulated. I think that most states will choose a single payer system like Canadas but probably with a bit more coverage. But states may try different things.

Two things I would like to see different though is that I would like to see less national government involvement than we see in Canada and even more local control. The federal government in the US should be there to address a few issues the states can't like folks from Minnisota retiring in Florida.

> Then we leave it to the states to iron out the details.

Yeah, that specific model doesn't work for Canada. It's a large part of why we left, and a large reason why my son was abused.

Letting the states handle it will be problematic. What happens then, when a state will not support certain procedures, but other states do? Following the Canadian model, your screwed if you live in the wrong state.

Sure, you can move, but then that becomes another issue entirely. You'll have doctors leaving states to move to states that can provide more jobs. Quebec is suffering this, and the left over doctors are overworked, and offer less than stellar service. And yes, you can incentivize staying all you want, and it won't happen. Or you might require they work X years in the state if they accept some funding for schooling, but then they'll leave when they can for better jobs elsewhere.

I'm sorry, but I've had to deal first hand with this model and the specific problems it causes, and I'll fight to prevent it from following me.

> I don't know why more people don't talk about this.

They do. People dismiss it, calling them the exceptions. The problem is, a lot of people in Canada can't simply come to the US to get care, nor do they realize they could.

Every time someone proposes Canada as a model, I trot out my story in the hopes someone will realize that their is a dark side.

No. Never again. It was no better than child abuse.

Probably because it violates both their parties beliefs.

The problem for some of us in the USA is that we have seen government health care run the USA way. I lived under IHS (Indian Health Service) for a big chunk of my life. They came about 6 hours from killing my Dad and my brothers records "disappeared" and he has a mis-diagnosed back. Google "don't get sick after june" for the typical problems. I myself had a botched root canal (3 surgeries afterwords) and lesser back problems.

Given this, I don't see how they can be more competent with more people under the system. If you cannot get it right for 1.2% of the population, you are not going to get it right for the rest.

That said, there are some things government could do that would help everyone. A "cataclysmic" insurance modeled on flood insurance to take care of costs over a certain dollar figure payed out of the taxes we already pay. Cut the cost of drug approval and work out longer term cheaper payments beyond the patent life. Tort reform for drug approved for the FDA. Scholarships for every nurse and doctor keeping a decent average. Reduce the cost of filling out government paperwork. Loans to needy individuals to pay their healthcare bill, payed back to the IRS.

I'm not very optimistic because I haven't heard any politician looking at what the actual input costs are for health care and trying to reduce those. They seem to accept health care costs will stay high.

IHS is bad, but it's not just that though. As a way of controlling costs, Medicare is a dismal failure. This may be similar wrt IHS, but basically government health care means, in the US, underfunded doctors, and money channelled to large corporate interests, like big pharma.

If we just look at taxpayer dollars spent in the US on health care, we still outspend the rest of the world. If our government could control costs, they would have. States are powerless because a very large minority of expenditures are regulated primarily by the feds, and they actively avoid cost control outside IHS.

We have a system which is so structurally broken I just don't know what you can do without starting with huge structural changes, which would be scary to those on things like Medicare.

The US healthcare system is broken but that doesn't mean that other countries' systems can be transplanted here.

This is true. Most of them won't scale up sufficiently, or rather if you try they will be captured by corporate interests.

But that doesn't mean we can't look at what others are doing and try to fix things here.

Single payer works on a small scale by giving groups of people effective representation in collective bargaining, something that private insurance doesn't do. It also works by giving that same group collective bargaining regarding drugs and medical devices. It doesn't work by creating this huge insurance pool which is what we are told.

We could take the PPACA and change it, requiring that all insurers qualified under the plan are owned and operated by the insured, and then we could require compulsatory licensing of patents for medicines and medical devices.... And then we could take on the AMA's role in accrediting medical schools.

But pigs will fly first.

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?

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.

Just noting, provinces in Canada with CDC-like organizations did pretty well regarding SARS. Ontario, OTOH, had one of the highest mortality rates (and public health impacts) in the world. Keep in mind Toronto was closing hospitals due to the spread of the disease there during the public health crisis...

Shut up and give this guy $10.

Unnecessarily rude. I suggest you think twice before posting again, Daniel.

This guy needs our charity, not our political opinions.

He is planning on relying on both Medicare and Medicaid. He already has our political opinions, and thank goodness he does.

Individuals shouldn't have to rely on popularity contests to be cared for when tragedy strikes: as a society we should care for everyone in the same situation. Charity, while good for the individual, is bad for society because it takes away from the importance of providing equally-available support.

It's a reasonable argument, but he has problems that need solving now. If someone's hungry, you give them food; a philosophy lecture is not edible.

Actually, that's not what this sounds like at all. He's protecting his assets for his children and preparing so he can receive public assistance; he's not about to starve or be kicked out of his home or taken off life support or have to file for bankruptcy. He isn't even raising money for immediately necessary expenses; he is raising money for foreseeable care expenses in the future.

Your hyperbole is rather baffling; I don't see the purpose behind it.

Given s_henry_paulson's sadness enough to comment, I'd say it's likely he has donated. Funnily enough I don't see why it's necessary for you to be outright rude to him.

Edit: I'm glad you've dropped the threat nonsense.

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.

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!

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.

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.

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..

the full version cache includes donation links


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.

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

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.

This remind me of another programmer who got ALS: Hal_Finney

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

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

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.

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.

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.

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.

You know, I'd put $20 down that a moderator wrote a script that scrapes the front page every N minutes and then compares titles on the submission to the title of the link and fixes it if they differ. It was probably just a quick experiment, much like many of the changes on HN.

I think HN should implement the same restrictions as Reddit (Yes, I said it), nobody can change the title once the post has been submitted. This ensures consistency throughout the post's lifetime.

Submitters do occasionally badly editorialize titles so there is some need for editors to fix them, but of late there really has been an extremely overzealous HN editor or two at work.

Actually, at this point I'd agree - I'd rather have immutable submitter-editorialized titles than editors butchering half the submissions.

Submitters do occasionally badly editorialize titles so there is some need for editors to fix them, but of late there really has been an extremely overzealous HN editor or two at work.

Yep, exactly. I don't have a problem with editors fixing titles that are full of gratuitous spin or editorializing. But lately it seems that they're all but enforcing a policy of "every link must have the original page title and nothing else" and that's just silly.

> Submitters do occasionally badly editorialize titles so there is some need for editors to fix them

Someone should try making a website like this, except use the upvotes and downvotes of its users to determine which titles and articles are worthy of being shown.

Like a caption contest for articles?

Alternately we could just show an edit trail indicating who changed the title and what it was before.

As there is always bashing over the "fixed" headline issue, let me take here a bit of an contrarian position. In the past my titles have been changed numerous times but I slowly came around and even found it somewhat a good idea.

# I think the problem is less with Hacker News but more with the authors of the original articles who are unable to write a decent topic for a posting. If an author is unable to communicate his message in the headline, it might be better to use another source.

# The fixing effect is in my opinion positive. The click baiting title rises up in the top news, but get reversed to some boring, non descriptive headline. It hopefully gets people curious why this news is in the top X and click on it. This has the effect that they are conditioned to read not always the most "screaming" headlines but also stories with weaker headlines.

# As an overall effect, the top news stories don't look like a shouting match where the scariest story wins. Instead it features also stories that have boring headlines and more a content over headline oriented approach.

Of cause this whole argument is somewhat arbitrary in your case, where a real life is at stake.

So, would we be better off with <a href="http://www.link-to-site.com/ /> and no link text? Surely not. As someone else said, the information with a link will depend on the context/audience.

Without a title like "Aaron Winborn (Drupal developer) - Special Needs Trust donations", I read the entire original story and a few of the comments before I realised that this must be someone known in a particular programming community.

If an author is unable to communicate his message in the headline

The author is writing a title appropriate for the location the article is posted at. That context may be critical and is missing once the article winds up on HN.

The fixing effect is in my opinion positive.

I would say it is net positive, but that doesn't mean there aren't cases that are significantly negative.

The top news stories don't look like a shouting match where the scariest story wins.

This is a false dichotomy. We can have sane editing of titles that give us context without leaving shouting matches.

The problem with "sane" editing is, that it is much more difficult to enforce than just a simple - always the original headline - rule. The story here is an exception as it is a personal interest theme. But as soon as we are in more subjective terms (e.g. "writing up" the successes of a project) I can imagine many comments discussing if the spin on a headline is still okay or across the line. Plus if somebody is convinced that the original story absolutely needs the editorializing it might be better to express this not just in a headline but to write a blogpost etc on it.

To give an example.

Let's say I link to the editorial of the German news magazine DER SPIEGEL. In the context of DER SPIEGEL, the title "Editorial" makes sense.

On HN "Editorial" is pretty much a useless title.

Thanks. After reading the article, I was wondering why this was posted to HN.

Agreed. I had no idea why this was notable (it is tragic, no doubt) before reading your comment.

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