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Hunting Down My Son's Killer

matt.might.net

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Re: Hunting Down My Son's Killer

#81

Post by untog »

simonh wrote: post #35
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.

So what you're saying is you were a complete waste of time and your parents would have been better off without you? Seriously - I'm not trolling or trying to be abusive. It seems to me that's literally what you're saying. Life isn't rational. Pleasure isn't rational. In the grand scheme of things, no achievements are significant or meaningful. But that's no way to live a life, IMHO. I know I'm far happier with my chi…

I think that maybe tomjen3 is reacting to the (oft-repeated) idea that anyone who says that they don't want kids simply hasn't realised that they're wrong.

I don't doubt that the majority of people want kids. I imagine that at some point hormones will kick in that make me want to, but it hasn't happened. So, the idea of having children is awful, as far as I'm concerned. Yet I am told again and again that "one you look into their eyes...". What if you're wrong, though? Having a child is a one-way street, I'd hate to have one and then realise I don't have the same satisfaction about it that others do.

Re: Hunting Down My Son's Killer

#82

Post by ars »

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…

The FDA has a concept of http://en.wikipedia.org/wiki/Compassionate_use which would allow them to use the drug even without any proof.

Re: Hunting Down My Son's Killer

#83

Post by hirenj »

mattmight wrote: post #68
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?

I'm afraid it isn't the most in-depth of a write-up!

I'm a postdoc computational biologist at the Copenhagen Center for Glycomics, so you could say this is somewhat up my alley ;)

Feel free to fire off an email (in the profile) if you've got any questions, and I can try to help out.

Re: Hunting Down My Son's Killer

#84

Post by orbenn »

"Unfortunately, we can't just order a batch and inject Bertrand.

We need to get FDA approval, and we'll need Genzyme's cooperation.

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."

It's shit like this that makes me hate the FDA.

Re: Hunting Down My Son's Killer

#85

Post by tzs »

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.…

> 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.

Related to that, understand that marriage is (generally) with someone who had a choice in the matter. If your spouse is not happy with some aspect of you that was reasonably discoverable before they married you, they can request that you change but have no right to expect you to.

For instance, if they know going into the marriage that you a workaholic who places the success of your business above doing "people" things, and they are going to have a problem being married to someone who only will have time for "couple" things maybe one night a month, then they should have declined to enter into the marriage.

Kids, on the other hand, have no choice. You made them, they are your responsibility, and if that means you have to limit your work to around 40 hours a week and do that on a regular schedule so you can be there to tend to them, play with them, entertain them, teach them, go to their school plays, and so on, that's what you have to do. As jasonlotito notes, your concerns now come second.

Re: Hunting Down My Son's Killer

#86

Post by sgt »

I honestly appreciated this read. To me this is "Genes for Dummies". Exactly what I need. I tried reading about genetics on wikipedia once but I got lost in all the details and thus failed to see the bigger picture.

Re: Hunting Down My Son's Killer

#87

Post by galactus »

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"

What does that even mean?

Is it "rational" to stay alive? (isn't it only "worth it" because your genes order you not to kill yourself?)

Re: Hunting Down My Son's Killer

#89

Post by maratd »

slurgfest wrote: post #76
maratd wrote: post #31

Earlier quoted context omitted.

You either don't have kids or you're a psychopath. I'm leaning toward the former. Don't presume in your arrogance that you know quite a bit about something you have zero experience with. All your accomplishments are pointless without your child next to you. > Yes you'll see it learn, smile, grow up It? Nice. > But you will not be able to play your games, go to your parties - read book or contemplate on life, or code…

It is not necessary or helpful to be uncivil about this. altrego99 is expressing a considered personal view with which you disagree, not insulting you or the mass of humanity. You are entitled to your personal view as well. But you could recognize consideration of the issue as a good thing and the disagreement as normal and healthy. Instead, you are calling people terrible names and picking on grammar, without provoc…

> But the implication that no one with kids could ever disagree with you is not correct

It is impossible to speak about any subject intelligently unless you have experience with it.

That's just how reality works.

If that offends your sensibilities, may I suggest you're a tad too sensitive?

Re: Hunting Down My Son's Killer

#90

Post by slurgfest »

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 =)

Many people are sterile and cannot have kids. They are still alive by any definition. Many people decide not to have kids but are good Aunts or Uncles or adopted parents. Many decide not to have kids but take care of them, teach them, mentor them. There are even, god help us, productive people who don't have anything specific to do with children. That doesn't mean their existence is meaningless.

On the other hand, a man who spreads his genes by rape may be having lots of kids, but he is not doing a good thing, and is probably not leading a deeply fulfilling life.

The case of adoption and the case of rape say pretty clearly to me that love is more morally fundamental than differential fecundity.

The moral purpose of your life is not given by population genetics in any case. It is an error to conflate purpose in the adaptationist sense with purpose in the sense of your life's fulfillment or your moral values.

Different people are suited to different ways of living, and find different forms of fulfillment; it is part of what makes life varied and interesting.

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