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Hunting Down My Son's Killer

matt.might.net

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Re: Hunting Down My Son's Killer

#61

Post by jonmb »

Arjuna wrote: post #53
tomjen3 wrote: post #21

Earlier quoted context omitted.

It is only 'worth it' because your genes needs you to protect the next generation. Rationally there is no point in having children at all. And speaking statistically, research shows that parents are no more happy than are those who are not parents.

"And speaking statistically, research shows that parents are no more happy than are those who are not parents." "Contrary to recent scholarship and popular belief, parents experience greater levels of happiness and meaning in life than people without children, according to researchers from the University of California, Riverside, the University of British Columbia and Stanford University. Parents also are happier dur…

It also depends on age and marital status. Young couples tend to be less happy with children, according to this study. I'd bet it also depends simply on how strongly the individuals want children. If you don't feel like you want kids, then it's probably a bad idea to have them.

Re: Hunting Down My Son's Killer

#62

Post by waffle_ss »

fghh45sdfhr3 wrote: post #28

Even though his disease is life-threatening, his seizures are worsening and he continues to lose white matter, we'll need to prove that it's safe. A good argument could be made, that bureaucratic regulators who get nothing if your son is cured, but could get in trouble if something they allow hurts him even more, are partly responsible for slowly killing him. For individuals in a dire enough state, a more intelligent…

I find this to be a very interesting idea, although I'm still a little dubious about it. I first heard it from an interview with famous Libertarian [Milton Friedman][1] (whom I adore) in his twilight years. The self-regulating mechanism of a system like this would be tort law, allowing consumers to sue companies if they haven't done adequate research and testing on their drugs before selling them. I have mixed feelings about this because I have a hard time picturing a class action suit being able to adequately take on a large pharmaceutical company with its own dedicated legal department.

[1]: http://www.youtube.com/watch?v=KUDV0YII6lk&t=4m10s

Re: Hunting Down My Son's Killer

#63

Post by yason »

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.…

Marriage is about compromise. Children, however, afford no such privilege.

No, marriage is having one heck of a good time living your life with your spouse.

Being a single parent is better than a bad marriage. And marriage can only be good if the parents know and acknowledge that they together go first, kids come second. Period.

Your spouse is the person you spend rest of your life (or at least decades, if you're lucky) and if you give up too much of that for the kids, you won't necessarily have a relationship once the kids move out in twenty years or so.

It's not my intention to lure you into thinking that parents should do whatever they need to do and mostly ignore the kids. (A whole lot of good people have been raised that way over the centuries, though.) However, nobody promised the kids a rose garden and neither did anyone promise the same to you.

It's just those times in life when there's too much everything and good times are sparse. That is when you need to take care of yourself first, because that's a prerequisite for a relationship. Then you need to take care of your relationship because that's a prerequisite for a working family of two parents and one or more kids. When the relationship is all right, then you can truly take care of the kids too, not just mechanically play a role for a decade while getting more and more bitter every year.

Most of the time you do all three—yourself, your relationship, your kids—but you must know which comes first in the tight spot. It's like oxygen masks on the plane.

After all, your kids will first try to learn how to live and be happy by mimicking how you live your own life.

You don't ever own your kids' lives and you won't even have much control over theirs for more than the 10-15 early years.

So be sure you take care of yourself and your marriage because that's what makes you happy for a long time, in your own life.

Re: Hunting Down My Son's Killer

#64

Post by mattmight »

sneak wrote: post #26

Why on Earth would you conceive another child with the risks involved here? There are thousands of unwanted children that would benefit from having such a thoughtful and dedicated set of parents. Is it pure egocentrism that keeps high-risk parents from adopting?

When we decided to have a second child, we'd ruled out every existing disorder that could possibly explain him.

After consultation with our medical team, they concurred that a de novo mutation for Bertrand was a strong possibility.

And, in truth, the conditional probability of de novo mutation for Bertrand was much higher than what actually happened--two independent mutations in the same gene colliding with one another.

If we had known the probability for Victoria was 1/4, we never would have gotten pregnant.

Ignorance was bliss.

Re: Hunting Down My Son's Killer

#65

Post by chaud »

waffle_ss wrote: post #38

Thanks so much for the fascinating and emotionally stirring article. I will definitely be passing this on to others I know. The thing I kept thinking during the article is, "Is there something that I, as a programmer, can do to help people like Bertrand?" Is there some way that we programmers could use our talent to augment or advance existing technology in this area? I realize that the science involved here is non-t…

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 twilight zone, better ways to share the data that we do have, better databases to store the data from high-throughput experiments, better ways to compare pathways and biochemical networks, and all of the other things that I could go on to list.

There is no shortage of problems to be solved, only shortages of good people and funding.

Re: Hunting Down My Son's Killer

#68

Post by mattmight »

hirenj wrote: post #19

First thoughts reading up on this pretty cool bit of detective work: Since this is a deficiency in production of Pngase F, I'm not sure a simple injection of Pngase F is going to work. I'd guess you'd need to target Pngase F into the ER to kick start the proper clean-up process, and the human form ( http://www.uniprot.org/uniprot/Q96IV0 ) is different to the recombinant form that you can get synthesised ( http://www.…

Wow! This is fascinating.

Thank you so much for the pointers!

Are you a grad student/postdoc/faculty?

Re: Hunting Down My Son's Killer

#69

Post by engtech »

aidenn0 wrote: post #47
mcmatterson wrote: post #29

Earlier quoted context omitted.

Balls to this. 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. Sure, we're programmed to behave with an otherwise inexcusable amount of irrationality with our kids, but that's not by accident. If anything, it demonstrates the level of evolutionary importance in keeping our offspring healthy and ensuring their success: it's such an important direct…

A non-parent could similarly argue that you don't get to pass judgement since you are under the influence of cognitive dissonance. Regardless, I have met parents who feel that way, and it can often turn out poorly for the child, though it really depends. One person I know who feels this way is a DBA who earns more than enough for his wife to raise the kids. She works part-time more to escape cabin-fever than to earn…

"A non-parent could similarly argue that you don't get to pass judgement since you are under the influence of cognitive dissonance."

The difference is that someone who is a parent has also been a non-parent.

Someone who is a non-parent has never been a parent.

Re: Hunting Down My Son's Killer

#70

Post by tzs »

tomjen3 wrote: post #21
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.…

It is only 'worth it' because your genes needs you to protect the next generation. Rationally there is no point in having children at all. And speaking statistically, research shows that parents are no more happy than are those who are not parents.

> Rationally there is no point in having children at all

Nonsense. When used as service animals, children have several advantages over the alternatives. They can be trained to do much more than dogs, for example, have a longer service life, and when they get too big to keep safely they yield more meat after first training their successors for you.

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