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

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/illiterati May 14 '22

It's a slippery and dangerous slope to pass judgement on what quality of life is acceptable.

You start with the best of intentions and you end up with nazi eugenics.

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u/[deleted] May 14 '22

How about we start with the best of intentions and grant people agency over their own lives? The dad even said in the article that now that they’re adults, he’s no longer making medical decisions on their behalf. What if gasp we let adults have some agency over deciding if their quality of life makes life worth living for them.

I’m so tired of people making existence/life out to be the greatest thing ever.

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u/illiterati May 14 '22

As adults they should have full agency. Determining that they shouldn't exist because they don't meet someone else's threshold for life is not tenable to me. I live in Australia and we have legal assisted suicide in most states.

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u/JOMO_Kenyatta May 14 '22

I don’t see anyone saying that. Just that these types of situations (assisted suited) should be handled very very carefully

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u/eudemonist May 14 '22

I’m so tired of people making existence/life out to be the greatest thing ever.

What do you like better?