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Vibe coding my way to a healthy family: Introducing Gamow Labs

ddmckinnon.com

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Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#41
post #38
post #35

Earlier quoted context omitted.

Does this make sense to you and her? Does she wish the kid would not have been born?

Such an inconsiderate and loaded question. Screening an embryo that could not survive outside the womb and deciding to stop the pregnancy based on the results is not the same as "wishing the kid wasn't born".

What are you talking about? Down Syndrom LE is 60 years.

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#42
post #28

Huh, this is fascinating. My wife and I did IVF with WGS in order to find a much less catastrophic shared genetic condition[0]. We have the FASTQs for my parents, and brother, and my wife and me, and our daughter (and our other embryos) and I've run it through the standard Opus[1] (since 4.5) and none have contradicted our genetic counselors or IVF doctors. This is an interesting, and devastating, condition far more…

The valley is extremely anti natal, it shows up in large scale demographic data very clearly, just check the census

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#44
post #35

Earlier quoted context omitted.

Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death. My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting. This is why most people abort D…

Does this make sense to you and her? Does she wish the kid would not have been born?

I knew people who had to take care of their children for their entire life, since they never grew up mentally above 6-years old kid.

Answer I heard is hushed "Yes".

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#45
post #35

Earlier quoted context omitted.

Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death. My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting. This is why most people abort D…

Does this make sense to you and her? Does she wish the kid would not have been born?

She is the sort of very optimistic and energetic person that she does not mind most of the time. But she is a bit sad about her decision not to have any other children - her first kid was just too much to handle, and she wouldn't be able to take care of another one, even if healthy.

This is also a hidden cost of having a Down's baby - given how exhausting the care is, other kids either get less attention, or don't get born at all.

Also, the father skedaddled. Allegedly this happens quite often with unhealthy kids...

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#46
post #16

It reads like a specific genome would lead to deterministic outcomes. It does not. Life is messy. Most Down Syndrome people have happy lives, some can even live alone and have an independent daily live. Life expectancy is up to 60 years. Yet in Iceland „Democratization“ of genetic diagnosis lead to basically 0% Down Syndrome kids (births). Where does this stop? What with someone of a genetic indication of aggressive…

Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death. My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting. This is why most people abort D…

In my country people with Down syndrome often live in housing together in suburban areas, with a social worker keeping an eye on things (independent living) or a carer available 24/7. They do sports, catch the bus, go to neighbourhood bbqs etc.

Your depiction of a person with downs is not representative of the majority.

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#47

Earlier quoted context omitted.

Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death. My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting. This is why most people abort D…

In my country people with Down syndrome often live in housing together in suburban areas, with a social worker keeping an eye on things (independent living) or a carer available 24/7. They do sports, catch the bus, go to neighbourhood bbqs etc. Your depiction of a person with downs is not representative of the majority.

> In my country > Your depiction of a person with downs is not representative of the majority.

It may be for a different country, both experiences are valid to hear. In my country as far as I know it doesn't happen like yours.

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#48
post #16

It reads like a specific genome would lead to deterministic outcomes. It does not. Life is messy. Most Down Syndrome people have happy lives, some can even live alone and have an independent daily live. Life expectancy is up to 60 years. Yet in Iceland „Democratization“ of genetic diagnosis lead to basically 0% Down Syndrome kids (births). Where does this stop? What with someone of a genetic indication of aggressive…

I would not bring a child into this world knowing they would die an early, painful death, at best leaving behind a family and children of their own without a parent themselves.

Potential people aren't actual people though either.

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#49

Earlier quoted context omitted.

Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death. My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting. This is why most people abort D…

In my country people with Down syndrome often live in housing together in suburban areas, with a social worker keeping an eye on things (independent living) or a carer available 24/7. They do sports, catch the bus, go to neighbourhood bbqs etc. Your depiction of a person with downs is not representative of the majority.

I am not an expert on Downs kids to know how majority looks like (are you?) Here in CZ, I knew of one preCovid cafe that employed adult Downs as waiters, and they absolutely needed supervision most of the time - cannot take the complicated Prague public transport alone. Maybe it is different in rural settings where there is just one bus line that never changes its course.

That said, prospective parents usually don't make their decisions to abort or not to abort on an expected median outcome, but some of the more pessimistic-but-realistic scenarios.

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#50

Earlier quoted context omitted.

Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death. My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting. This is why most people abort D…

In my country people with Down syndrome often live in housing together in suburban areas, with a social worker keeping an eye on things (independent living) or a carer available 24/7. They do sports, catch the bus, go to neighbourhood bbqs etc. Your depiction of a person with downs is not representative of the majority.

I’m fairly certain your depiction is not representative of the majority experience throughout the world.

I can’t say for 100% certain but I struggle to believe what you’re describing is more common than not. That strikes me as a level of support provided by the state that most people with ds - and their family - do not enjoy throughout the world.

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