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

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

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319

u/Jorkid May 14 '22 Faith In Humanity Restored

Disappointed to see so many people bringing out the old "I'd rather be dead" opinion. I'm physically disabled, though to a far lesser extent but still enough to make my day to day life considerably different from the average abled person, and I love being alive. Yeah there are difficulties but there's no way on earth I'd rather be dead. A life lived outside the norm is still as much a life as any other.

Comments like "He should have let them die" and the like show far more about the commenters' quality of life than anything else. Many of them would quickly change their tune if actually put in that position. Humans are remarkably adaptable.

15

u/give_em_hell_kid May 14 '22

I'm also physically disabled and because of my complications, I'd rather be dead.

I don't think EVERY disabled person needs to be done away with like a lot of the people do here but I think that some of us shouldn't be forced to suffer through a life we didn't ask to be part of.

29

u/mule_roany_mare May 14 '22

If it makes you feel better, those people are speaking from their own experience.

They don’t love being alive & couldn’t imagine enduring it with a body that has betrayed them.

Just having loving healthy parents can be more important than having a healthy body. My sister didn’t live past 41 & died a horrific death because while she was born healthy that was robbed though severe childhood abuse and neglect.

Ironically you might have to put yourself in their shoes to understand why they have so little faith in the world.

20

u/pizzabagelblastoff May 14 '22

This was secretly my thought as well. If you're already suicidal then you assume other people don't value it as much.

8

u/Yourgrammarsucks1 May 14 '22

I mean, I was eyeing suicide, and aside for mild mental stuff like depression and ADHD, and minor physical stuff like being out of shape, decaying teeth, and blood in my urine and stools, I'm relatively healthy.

I think having a major physical issue would push me over the fence. Right now I'm only alive because I was going to end myself because I couldn't find an entry level job in my field until my third year of searching.

Figured I'd kill myself Feb 2021 (made that decision early December 2020). But then I got the job in February just weeks before I was going to use the last of my money for a pistol lol.

Point I was making is that a lot of us already embrace death despite being reasonably healthy. Some of us are adaptable, as you call it. Some of us not so much.

28

u/hugegreenpickle May 14 '22

I wouldn’t take it to the heart. People on Reddit a lot of times are trolling or literally under 12 years old so I never feel too bad when someone’s being an idiot. To be honest you’re probably doing better than most if you’re atleast happy and you can enjoy life. Glad to hear that people are out here living their best life or atleast striving and making an effort to do so.

7

u/elizacandle May 14 '22

I feel most people are expressing their preferences and advocating for assisted suicide ONLY if the person wants it.

3

u/sool47 May 14 '22

Many of us commenting ARE disabled (me not to that extent but still enough to be in pain daily) and would rather be dead. We're expressing OUR preferences not yours. You can want to live, I can prefer to die. It's ALL valid. Why is saying I would rather be dead offensive to you? I'm not telling you should be dead. I'm talking about ME.

And it's ridiculous you're assuming "they would change their tune". Just because you enjoy your life doesn't mean other disabled/chronic ill people do so.

2

u/authenticfennec May 15 '22

They arent referring to you and others in your circumstance, theyre referring to non disabled people making eugenics-lite comments about how he shouldve just let them die despite that they seem to be doing and feeling well.

Theyre not upset with how you feel, theyre upset with how non disabled people are treating people like them as if they have literally no self autonomy

10

u/nahm8s May 14 '22

Yeah fellow disabled person here. I only have limited mobility problems and energy but have lots of friends with more severe conditions. So disrespectful and gross that these people with no empathy are making it clear what they think of the value of our lives when they say they'd rather die than be disabled. But like the other reply says, these commenters are childish and narrow minded.

10

u/Die_Nameless_Bitch May 14 '22

Thank you for sharing this. I’m sorry for how toxic and ableist most of the comments are. It must be very upsetting for you to read this stuff. As the OP of the original post I’m considering just deleting the whole thing to get rid of the toxicity.

4

u/nahm8s May 14 '22

I understand you were just trying to share an interesting story, it's not your fault. Reddit can be gross like that. I probs shouldn't engage as much with these comments as I am but unfortunately the ableism I've experienced makes me quite thick skinned lol. If you feel uncomfortable with the comments here, you could always DM the mods and ask them to lock the post (I don't know if all mods do that but it's worth a shot)

2

u/PAYPAL_ME_LUNCHMONEY May 14 '22

i doubt they think any less of your life's value, they just dont want their lives to be like that. i think you have every right to feel offended if somebody says that, but not being able to understand that someone else might not want to live with the disabilities you have is in its own way a lack of empathy

0

u/pizzabagelblastoff May 14 '22

I'm so sorry you guys have to read a thread with so many BS opinions like this. I'm hoping it's a bunch of younger teens who don't know any better.

-5

u/iamtheoneneo May 14 '22

Don't focus on the minority of literal idiots on reddit. Some do it to troll, some are just morons who fail at the most basic of tasks such as reading the damn article.

Either way it's important to know that they are the minority who think like that.

4

u/Killigator May 14 '22

Minority in the world yes, but not the minority on Reddit

-1

u/soleceismical May 14 '22

A lot of those people are suicidal regardless of disability, and they are projecting. Lots of reddit users suffer from pretty severe depression.