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Hunting Down My Son's Killer

matt.might.net

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Re: Hunting Down My Son's Killer

#21

Post by tomjen3 »

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.

Re: Hunting Down My Son's Killer

#22

Post by celticninja »

altrego99 wrote: post #20
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.…

Sorry, not worth it at all. Years 1-10 - you will loose all your time - cleaning diapers, making the child eat, making it study, teaching it values - waking up at night - and doing a lot of things for it. Yes you'll see it learn, smile, grow up and you're genetically conditioned to like it. But you will not be able to play your games, go to your parties - read book or contemplate on life, or code without expecting in…

Wow your kids must suck.

Re: Hunting Down My Son's Killer

#23

Post by mgoulart »

altrego99 wrote: post #20
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.…

Sorry, not worth it at all. Years 1-10 - you will loose all your time - cleaning diapers, making the child eat, making it study, teaching it values - waking up at night - and doing a lot of things for it. Yes you'll see it learn, smile, grow up and you're genetically conditioned to like it. But you will not be able to play your games, go to your parties - read book or contemplate on life, or code without expecting in…

Is that what your parents told you ? :)

Re: Hunting Down My Son's Killer

#24

Post by maratd »

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.

Well, at least you're 50% there. Don't compromise with your wife, either.

Lead your wife and children to a better place. Lead them to a place where all of you are happy and yes, it is possible. It's very easy to "compromise" ... just divide by two, right? Much harder to use your noggin and figure out a position where everybody is genuinely happy. You can compromise with your business partners or whoever else is largely irrelevant. With your family, spend the few extra calories, burn the oil, and figure out a path toward making everyone optimally happy.

Lead them there.

Re: Hunting Down My Son's Killer

#25

Post by mattmight »

Stwerp wrote: post #11
mattmight wrote: post #5

Earlier quoted context omitted.

Remarkably, the cost of the exomic sequencing is a small fraction of what we spent on individual genetic tests over three years. Exomic sequencing is so efficient that it will likely replace testing for individual genetic disorders one-by-one in the near future. In the pilot study at Duke, they diagnosed 6 of the 12 children, each of whom had an ordeal very much like my son. In the rare disease community, this techni…

Your article is amazing. I was moved to tears many times reading through this. (My wife is 6 months pregnant right now.) Just wow. Good luck with it all, and the fact that Victoria does not have the same diagnosis is just amazing! I'm glad Duke could help and your story is beautiful and inspiring. I don't know what to say, just, thank you so much for writing this. I will certainly be passing this on to some friends.

Thanks for sharing!

Becoming a parent is an awesome experience--one I wouldn't trade for anything.

I can still remember time freezing the moment each of my kids was born.

I wish you, your wife and your little one the best.

Re: Hunting Down My Son's Killer

#26

Post by sneak »

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?

Re: Hunting Down My Son's Killer

#27

Post by vectorpush »

This was a fascinating and inspiring read. It's astounding to consider the granularity with which we can debug the software of human biology, even if it requires incredible resources. That protein visualization is dumbfounding, but it feels comforting to know that human source code isn't completely intractable.

Re: Hunting Down My Son's Killer

#28

Post by fghh45sdfhr3 »

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 set of regulations could be something like if enough well known and respected doctors agree this is worth trying, go for it. But bureaucracies are rarely intelligent.

It's just that most of the time bureaucratic involvement creates frustration, costs money, takes time, kills economic growth, etc.

But when it comes to life threatening disease and potential cures, bureaucratic involvement might actually cost lives. Because it is not optimizing saving lives, it is optimizing "safety" over lives, because it is actually optimizing bureaucratic ass covering.

Re: Hunting Down My Son's Killer

#29

Post by mcmatterson »

altrego99 wrote: post #20
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.…

Sorry, not worth it at all. Years 1-10 - you will loose all your time - cleaning diapers, making the child eat, making it study, teaching it values - waking up at night - and doing a lot of things for it. Yes you'll see it learn, smile, grow up and you're genetically conditioned to like it. But you will not be able to play your games, go to your parties - read book or contemplate on life, or code without expecting in…

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 directive in fact, that evolution has deemed it more important than the needs of the parents to 'play [their] games, go to [their] parties -- read book[s]...or code'.

I'm not going to tell you you're objectively wrong on this, but I will tell you that you have no idea what you're talking about. Life is a squishy, inconvenient, and occasionally beautiful endeavour. Realize that.

Re: Hunting Down My Son's Killer

#30

Post by drivebyacct2 »

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?

>Is it pure egocentrism that keeps high-risk parents from adopting?

If it's not, I'd love to know what it is. Aww, downvotes from selfish people. Love doesn't require blood.

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