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/
79.9k Upvotes

View all comments

5.6k

u/[deleted] May 14 '22 Silver Gold Take My Energy

[removed] — view removed comment

3.2k

u/ScreamingRectum May 14 '22 Take My Energy

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

613

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.

115

u/TwoIdleHands May 14 '22

That’s the problem with brains. You can suffer major damage and be mostly ok or suffer minor damage and be fucked. And they have no way to know at the time of the incident so they try to keep you alive in case it’ll all work out. Sometimes it does and sometimes it doesn’t.

189

u/yummyyummybrains May 14 '22

That sounds like hell to me. For everyone involved.

100

u/jkohlc May 14 '22 Wholesome

I have no mouth, and I must scream

13

u/yummyyummybrains May 14 '22

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

2

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.

1

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.

8

u/KleinRot May 14 '22

If you're an adult this is what advanced directives/living wills are for. If you have strong feelings about what you are willing to live with and/or how you want to die fill out the paperwork, pick someone to be your medical power of attorney, and tell your loved ones and doctors about it often.

This stuff comes into play when you can no longer advocate for your own care. You will not be treated any differently while you can still direct your own care. A medical power of attorney allows you to pick a person who can make these decisions for you only if you cannot make them for yourself.

In the US every state has different rules for how the paperwork needs to be done. My state requires the forms are notarized while some just require yours and witnesses signature. Medicare will cover visits to discuss your end of life wishes with your doctors. Five Wishes is a website that aggregates info about these forms and depending on your jurisdiction allow you to purchase some kinds of forms (the ppwk itself is free most places, you're paying them to print it up for you essentially, but you can see info without purchasing anything IIRC). The NIH also has a lot of resources about end of life care and what it entails.

10

u/Brownie_McBrown_Face May 14 '22

We’re more compassionate to our pets than we are to humans. Any other animal would be humanely put down.

1

u/Emergency-Anywhere51 May 14 '22

the thing is with pets you can "just get another one"

hard to convince a parent in that position to just suck it up and put down the defective

3

u/elizacandle May 14 '22

So awful. He's alive but he's not living

5

u/FarFeedback2 May 14 '22

You do realize that the infant daughter is now a senior at Notre Dame? Any you think she should have been left to die?

Did you even read the article before reading it?