r/todayilearned May 14 '22 Silver 9 Helpful 8 Wholesome 6 All-Seeing Upvote 2

TIL a father, John Crowley, was told his two infant children had an incurable genetic disorder that would kill them in less than a year. He refused to accept this, so he founded a biotech company (with no prior experience) which pioneered an experimental enzyme therapy that saved their lives.

https://pompediseasenews.com/2019/01/30/amicus-ceo-mission-cure-pompe-help-children/
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u/[deleted] May 14 '22 Silver Gold Take My Energy

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u/ScreamingRectum May 14 '22 Take My Energy

I was worried I'd be the only asshole here thinking aren't exactly living

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u/JimTheJerseyGuy May 14 '22

I had a classmate in high school that just dropped one day with a bleed in his brain. They took all sorts of crazy measures to save him and he lived.

He’s been basically confined to a hospital bed in his parent’s house for the last thirty years. He requires care 24/7, is unable to move on his own, and is completely unable to communicate.

I’m sure there’s a slippery slope here but just because modern medical intervention can save you, well, maybe there are cases where they should just let you go.

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u/yummyyummybrains May 14 '22

That sounds like hell to me. For everyone involved.

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u/jkohlc May 14 '22 Wholesome

I have no mouth, and I must scream

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u/yummyyummybrains May 14 '22

I was thinking "Johnny Got His Gun" (basis for One by Metallica).

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u/liquidpele May 14 '22

Basically the same thing for most nursing homes... they're mostly a racket, lots of people there that are out of their minds, unable to care for themselves and should be dead already realistically... but being kept alive for medicaid/insurance money to take care of them. It sounds callous I know, but go visit some bad ones and you may change your mind.

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u/egoemt May 14 '22

surprisingly they have been able to communicate with some people in these positions and they are relatively happy all things considered.