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Hunting Down My Son's Killer

matt.might.net

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Re: Hunting Down My Son's Killer

#291

Post by Confusion »

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 =)

That's the prime example of the naturalist fallacy. The way something is implies nothing about the way things ought to be. That we are around because our ancestors reproduced does not mean we must also reproduce. What naturally happens is not necessarily morally acceptable. Otherwise it would also be morally acceptable for me to kill your children and impregnate your wife, as happens with so many animal species.

I recall explaining this to you before. I will value your comments much lower in the future, since I will always have to watch for you being equally irrational about other subjects.

Re: Hunting Down My Son's Killer

#292

Post by pimentel »

mattmight wrote: post #5
euroclydon wrote: post #2

Where is the line drawn between medical research and healthcare for your son? In other words, what on earth does this cost?

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…

When there's scientific interest in the case, will a university charge for exams and tests? What about research clinics? When does an institution say "from now on, we'll take care of costs"?

Re: Hunting Down My Son's Killer

#294

Post by perlgeek »

luminaobscura wrote: post #124

why not just perform euthanasia and focus your energy into raising the healthy child?

It took me a while to realize what exactly it was that disturbed me about your question. I don't have any problems with talking about euthanasia, but the casualness with which you mention it shocks me.

Would you "just" kill your son if he wasn't healthy enough?

Re: Hunting Down My Son's Killer

#295

Post by ykaranfil »

apaprocki wrote: post #16

Just as a useful data point, exome sequencing is now in the sub-$1000 range.[1] There will definitely be a shortage of skilled people able to interpret the data and find mutations like the one mentioned in this article as the sequencing price point continues to drop. [1] https://www.23andme.com/exome/

Just ordered a kit from 23andme

Re: Hunting Down My Son's Killer

#296

Post by nitrogen »

nitrogen wrote: post #250
sevenstar wrote: post #127

Earlier quoted context omitted.

Thanks, it looks like the medical industry is trying to bury my post.

Just so you are aware, your posts on this thread have probably gotten your account automatically banned for excessive downvotes and flags. You are probably being downvoted because you are giving potentially life-threateningly bad advice, not because "they" are trying to bury your post.

Once again, just to make sure you are aware of the outcome of your posts, your account is dead. I cannot reply to your response to this comment, because it is [dead]. If you try and succeed getting your account unbanned, please consider posting more supporting evidence when giving advice of the form "Eat poison...because medical industry conspiracy!"

Re: Hunting Down My Son's Killer

#297

Post by GFischer »

mattmight wrote: post #5
euroclydon wrote: post #2

Where is the line drawn between medical research and healthcare for your son? In other words, what on earth does this cost?

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…

Hopefully, sharing this information and your story will lead to more informed doctors recommending this technique.

Thank you for an inspiring story and your exemplary perseverance.

Re: Hunting Down My Son's Killer

#299

Post by asdf25 »

ars wrote: post #82
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.

Thanks for answering the whole issue I came here to complain about, always a nice change to see laws functioning semi-rationally.

Re: Hunting Down My Son's Killer

#300

Post by rmc »

sevenstar wrote: post #127
GigabyteCoin wrote: post #104

Earlier quoted context omitted.

No, it won't. http://en.wikipedia.org/wiki/Medical_uses_of_silver#Adverse_...

Thanks, it looks like the medical industry is trying to bury my post.

Or this community is full of engineers and scientists who don't believe in the quack medicine conspiracy theories about how their being oppressed by science.
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