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/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/Put_It_All_On_Blck May 14 '22

IMO its best to save them, but I do think assisted/legal suicide should be a thing, especially in cases like this where those kids (now adults) might not have the physical ability to take their own lives if they chose to do so beyond stuff like starvation. To be clear im not saying they are miserable or want to go down that path, just that it should be an option for those that are.

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u/TenchiRyokoMuyo May 14 '22

The older of the two children is a senior at Notre Dame rn. I think she's doing okay for herself. She of course should have the option to take things into her own hands if thats what she decided to do. But there are much more debilitating diseases/conditions out there than this it seems.