Hunting Down My Son's Killer • Hacker News Board

Re: Hunting Down My Son's Killer

#111

Post by jasonlotito » Tue, May 29, 2012, 7:13 PM UTC

aidenn0 wrote: post #39

jasonlotito wrote: post #9

As a father with a son with severe autism (not to suggest it's equivalent to Bertrand's condition), there is an important lesson here that might not be apparent at first read. Before you have children, understand that it's for the rest of your life. Really understand the impact. Your concerns are second, beyond anything you've ever understood. Marriage is about compromise. Children, however, afford no such privilege.…

As a father of 3, I think the question of "is it worth it" is not as cut-and-dry as you suggest. As I am an extreme introvert, in the near-term, having kids definitely makes me less happy in many measurable ways. That being said, taking care of children is something I have always been drawn to, and is the way I have chosen to leave my mark on the world, as it were. We fostered our first two kids for 18 months before…

> As a father of 3, I think the question of "is it worth it" is not as cut-and-dry as you suggest.

I never meant to imply anything was so cut and dry. Apologies for making it seem so. I just wanted to point out something people should learn from this post. No one should have children because they feel as if they are expected to. They really need to understand what kind of commitment it entails.

Re: Hunting Down My Son's Killer

#112

Post by wpietri » Tue, May 29, 2012, 7:15 PM UTC

postfuturist wrote: post #54

It pays to become an expert in your own (or your family members') medical conditions, because you'll quickly become more of an expert than 99% of the doctors you will rely on for care. It helps when they all ask the same dumb questions, which they will do. If your condition is mildly rare, you'll notice when you see a new doctor, that their knowledge will be limited to what you found out in the first hour of internet…

So true.

My brother nearly came to blows with an emergency room doctor who didn't know the difference between a cancer grade [1] and a cancer stage [2]. Confusing the two, he started to give us the "time to let go" speech, when the appropriate medical action was immediate treatment to suppress brain swelling. Had we not known the difference, she could have died right there.

And there were a number of other less dramatic occasions when being on top of the details solved all sorts of problems when dealing with non-specialist doctors. Which is not to knock them; there are a lot of ways that bodies go wrong, and trying to extract any sense out of the phone book of printouts and scribbled notes in my mom's medical charts is not something anybody could do quickly.

[1] http://en.wikipedia.org/wiki/Grading_%28tumors%29 [2] http://en.wikipedia.org/wiki/Cancer_staging

Re: Hunting Down My Son's Killer

#113

Post by [deleted] » Tue, May 29, 2012, 7:16 PM UTC

mcmatterson wrote: post #42

paulhauggis wrote: post #36

Earlier quoted context omitted.

"As your sibling commenter says, you simply don't get to pass judgement on this if you haven't had a child of your own." You aren't gay, so you can't pass judgement on gay rights. You don't smoke weed, so you have no say in the laws The thing is. You can still have an opinion (and pass judgement)..even if you haven't experienced it yourself.

You'll notice that later on my comment I said 'I'm not going to say you're objectively wrong on this'. I'm not begrudging the OP his/her opinion, I'm simply saying that without the mental reset that is parenthood, the OP simply does not have enough information to make any factual statement on the matter. I'm not saying that the OP is wrong or unentitled, I'm simply saying that they're exhibiting a potent mix of naive…

[deleted]

Re: Hunting Down My Son's Killer

#114

Post by joshu » Tue, May 29, 2012, 7:18 PM UTC

Inspiring and amazing.

A few impressions:

Although the author removes much of the emotion of the story, I still sense the undercurrent.

The future is going to be strange. Way more complicated than science fiction, our guidestar for so long, led us to believe.

I hope that when the time comes, I will be able to measure up to the author as a person, as a parent, etc.

Re: Hunting Down My Son's Killer

#115

Post by krschultz » Tue, May 29, 2012, 7:18 PM UTC

postfuturist wrote: post #54

It pays to become an expert in your own (or your family members') medical conditions, because you'll quickly become more of an expert than 99% of the doctors you will rely on for care. It helps when they all ask the same dumb questions, which they will do. If your condition is mildly rare, you'll notice when you see a new doctor, that their knowledge will be limited to what you found out in the first hour of internet…

To be fair to (most) doctors, especially your primary physician, have to diagonose a huge range of conditions. The edge cases are rare and so they are not as well versed on them.

System specialists are an order of magnitude better. I.e. going to an Ear, Nose & Throat doctor if you have Asthma.

Disease specialists are the pinacle. Sometimes these are researchers rather than normal doctors.

Re: Hunting Down My Son's Killer

#116

Post by crag » Tue, May 29, 2012, 7:19 PM UTC

maratd wrote: post #75

jonmb wrote: post #49

Earlier quoted context omitted.

Agreed. Saying children are not worth it is an extreme position, but saying that life is pointless without children is perhaps even more extreme. It's like saying life is pointless without a wife, or without God.

The point of all life is to reproduce. It's one of the qualifications to be considered alive. So yeah, without children, life literally loses its meaning =)

"... considered alive"?

So me, being a gay man, married to a gay man, with a dog, but no children - I am not really alive?

Not to mention, considering we have close (maybe more) to 7 billion on the planet, I think a little selective parenting is in order.

Re: Hunting Down My Son's Killer

#117

Post by chubbard » Tue, May 29, 2012, 7:20 PM UTC

That was an awesome article. I couldn't finish it as it was too long, but the technical detail in it was really awesome. Just the biology and relating it to computer nomenclature was really interesting. I think what's really amazing about blogging about the topic is you've created a brain dump of your most of your knowledge on the subject. Everyone who reads that is now much more versed than most medical staff anyone might run into, but because it exists they can educate themselves on your child's history as well. You've created a piece of fairly rare scientific information that exists in the public free for comment. That's not something we'd have done even 10 years ago.

Re: Hunting Down My Son's Killer

#118

Post by chaud » Tue, May 29, 2012, 7:21 PM UTC

lmm wrote: post #100

chaud wrote: post #65

Earlier quoted context omitted.

Sure, go in to bioinformatics research. You might even end up doing something that benefits humanity more than trying to make the next Facebook! Data is piling up faster than we know what to do with it. There are a lot of problems to be solved that might benefit from computer science. De novo Protein structure and function prediction, better alignment from noisy data, drug target discovery, homology modeling in the t…

>You might even end up doing something that benefits humanity more than trying to make the next Facebook! Data is piling up faster than we know what to do with it. It's worth mentioning that some of the best tools for letting us do something with it come from the current facebook. I'm constantly tempted to move into academic research rather than helping people get their porn faster, but it seems like a very superfici…

Fair enough, but who is to say those tools wouldn't have been developed if those people were doing bioinformatics research instead.

It is frustrating seeing all of the failed startups that thought their poorly thought out plan and execution would create a product that is actually useful. We would be much better off if someone would take the time to explain to people why their idea sucks and save them the time and money that would be wasted on executing it.

Re: Hunting Down My Son's Killer

#119

Post by Mz » Tue, May 29, 2012, 7:22 PM UTC

This is incredibly long and seems like it will probably never tell me the info that interests me. As I understand it, in most genetic disorders, all of the problems are rooted in a miscoded protein. I am wondering if it has been determined which protein is miscoded and what it does?

Edit: I have managed to read the whole thing and, no, it doesn't answer my question. The closest I get is that some enzyme is not being produced. For me, that is insufficient info. Moving on to the blog but would still be happy to get an answer here. Thanks!

Re: Hunting Down My Son's Killer

#120

Post by zug » Tue, May 29, 2012, 7:22 PM UTC

krschultz wrote: post #115

postfuturist wrote: post #54

It pays to become an expert in your own (or your family members') medical conditions, because you'll quickly become more of an expert than 99% of the doctors you will rely on for care. It helps when they all ask the same dumb questions, which they will do. If your condition is mildly rare, you'll notice when you see a new doctor, that their knowledge will be limited to what you found out in the first hour of internet…

To be fair to (most) doctors, especially your primary physician, have to diagonose a huge range of conditions. The edge cases are rare and so they are not as well versed on them. System specialists are an order of magnitude better. I.e. going to an Ear, Nose & Throat doctor if you have Asthma. Disease specialists are the pinacle. Sometimes these are researchers rather than normal doctors.

I have a genetic disease that shows up in 4/100k people, so rare, but not that rare. Any sizable town has at least a few dozen people with my disease.

In my experience, "an order of magnitude better" in specialists means they've at least heard of it, but know nothing about it. Every time I move, I have to spend some time educating my new specialist on the disease. I know damn well that every time one of them excuses themselves in the middle of the exam, they're going to look it up on the internet. It's pretty disheartening.