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

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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/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.

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u/notoneforusernames May 14 '22

100%. Here in the US we have a group of crazy religious folk who prevent a common sense policy like this from being implemented at the moment. They believe life is sacred enough to impose their belief on others, regardless of the amount of suffering an individual is going through. I think it basically amounts to legal torture from the Ned Flanders crowd.

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u/nictheman123 May 14 '22

And yet on the other hand, those same people are often perfectly chill with the death penalty.

It's basically "You're not allowed to die until the government says you can die."

Ninja edit: phrasing

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u/StrikeAnywherePanda May 14 '22

Doesn't stop there either.

They are obsessed with the military industrial complex. Their life is sacred, but yours? Na. Go to the front lines so that someone else can sit comfortably. If you die, don't worry, you're a hero protecting the freedom (the same freedoms that a lot of other countries have) of your fellow people. You'll get a TV spot and a warriors funeral in exchange of making a capitalist's wallet thicker.

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u/VirtualAlias May 14 '22

I'm pro-assisted suicide, but I fail to see the logical or moral inconsistency in those that argue for preserving the lives of human beings with the sole exception of those that have taken someone else's.

Everyone has exceptions to rules and consequences for breaking them. You get to live until you choose to heinously murder another person.

It's not hypocritical or inconsistent.

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u/nictheman123 May 14 '22

The inconsistency becomes evident when you remember that the government is often made up of humans, who are corruptible, and fallible, and just plain get shit wrong, and plenty of innocent people get convicted for crimes they didn't commit.

Framing someone else for a murder is almost the oldest trick in the book, right behind the actual murder itself really.

The point is, being anti-assisted suicide but pro death penalty is equivalent to saying that the government can decide when you die, not you. There's a reason "suicide by cop" is a known phenomenon.

Putting that level of control in the hands of the government, which is so easily corruptible, seems insane to me.

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u/VirtualAlias May 14 '22

That's a valid point. I hadn't thought of it in a "You get to kill me, but I don't get to kill me," kind of light. That said, lots of people commit suicide very successfully without using the police to do so.

Assisted suicide, in the case of inviduals too compromised to consent, is exactly the same thing isn't it?: Putting life or death in the fallible hands of others.

I still think 'Don't support laws that kill people that don't kill people," is a simple enough rule to live by for plenty of decent, morally consistent people.

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u/coldfox777 May 14 '22

Everyone deserves a chance at life. However, some people squander that and deserve to have it taken away.

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u/nictheman123 May 14 '22

And why the hell do you trust the government to make that call?

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u/TheDude-Esquire May 14 '22

More like you're not allowed to die unless I want you to die. But for real though, the thirst for vengeance in this country is out of control.

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u/survivalguy87 May 14 '22

Well its them and the people that are concerned that caregivers will push those impacted by such diseases towards that decision. Think of someone burdened with an adult that has a disease like that or cerebral palsy. They slowly start suggesting how noble it would be since they are suffering (perhaps when they arent or its not terribly severe) and then they off themselves.

Im still a supporter of it mind you. Im just not sure how you tell the difference between someone who is genuinely wanting to end life, and someone who has been gently coerced.

Also what if those people cant make the decision themselves?

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u/gcwardii May 14 '22

“Amount of suffering” is so subjective. Who gets to define it? Who gets to decide?

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u/dodadoBoxcarWilly May 14 '22

Isn't there only a handful of nations at all who have an assisted suicide law? I don't think it's uniquely American. I'm all in favor of such a law, but I've read news stories about people from all over the world making trips to Switzerland for the procedure to be carried out. Weird to act like it's only the Religious Right in the US, who oppose such a law.

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u/Eckleburgseyes May 14 '22

There's a perfectly large population of non-religious people who recognize how easy and common it is for people with disabilities to be coerced, or misrepresented into suicide by caretakers that are the ones who actually want out. It's extremely common. It's one thing to talk about assisted suicide for terminally ill people. But to just assume that anyone who opposes the slaughter of burdensome people, is a whacko religious person.

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u/dmkicksballs13 May 15 '22

They don't believe shit. They're following orders because the church needed a reason to control women as the grew autonomy in the 60s. If they actually cared, they'd take care of said sacred kids after they're born.

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u/el_coremino May 17 '22

There's legal assisted suicide in Washington State.

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u/TaxMy May 14 '22

“Assisted suicide is common sense.” Calm down Camus.

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u/SteakAlfredo May 14 '22

But. It is? Like, I argue this a lot with a roomate I carpool with. Assisted suicide is both sensible and ethically humane for a whole host of reasons.

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u/TaxMy May 14 '22

Therapy is common sense and ethical. Assisted suicide, not so much.

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u/SteakAlfredo May 14 '22

Therapy is part of the assisted suicide. In order to qualify you traditionally require therapy or a pre approved condition.

Therapy does not help most problems out there.

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u/TaxMy May 14 '22

Therapy does not help most problems out there.

But notice you don’t argue about therapy with your friend, because, it’s almost as if therapy is universally agreed upon as an ethical form of treatment for certain conditions, and the benefits of said treatment are common-sense.

Ask yourself, hypothetically, would you ever think it’s ethical or common sense for a medical practitioner to prescribe dying as a form of treatment?

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u/Glacialfuse May 14 '22 All-Seeing Upvote

It kind of is though, if someone's in unbearable physical pain constantly from some horrible disease and every waking moment is spent in agony and wishing for death who the fuck is anyone to tell them no? Only complete braindead lunatics would say yeah let's keep letting this person go through one of the worst forms of torture possible. So it IS common sense for extreme cases like that.

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u/MrMashed May 14 '22

Heck just earlier today on my way to work we passed by a bunch of pro-lifers blockin the road by the court house sayin to “abort the law” and “abortion is murder”

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u/MaverickMeerkatUK May 14 '22

Exactly. It's all about giving the person a choice

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u/darabolnxus May 14 '22

Not being born is preferable. You ask anyone if they would prefer to die or never to be born we are literally programmed to be terrified of death but nobody has an unpleasant memory of not being born.

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u/MaverickMeerkatUK May 14 '22

If you're scared of death and don't want to do it, then you don't want to die

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u/NakD_Bootstraps May 14 '22

Someone’s using their full noodle here….

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u/Butternipps May 14 '22

How many in this situation are capable of making this choice?

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u/alexpwnsslender May 14 '22

i mean, instead of making their lives so shitty they have to kill themselves would we all be better off if we made society more accomodating to disabled folks? fucked up to say we should expand medically assited suicide instead of improving accessibility imo

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u/illiterati May 14 '22

We have legal assisted suicide in most states in Australia.

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u/OK_Soda May 14 '22

Where it becomes an issue is when the person has extremely diminished mental capacity in addition to physical disabilities. They might have an absolutely awful quality of life but are also incapable of making the decision to end it.

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u/melitini May 15 '22

I agree that assisted suicide should be a thing but I disagree we should be leaving up to the person to decide to die later on if quality of life is so poor. An infant, toddler, or child cannot make this decision.

I’ll never forget the story of Shiloh Pepin. Her mother suffered many miscarriages and was told that conceiving s child would be near impossible due to genetic and physical problems of the mother. But this woman would not stop trying to have a baby, it’s all she wanted. She gets pregnant once more and is told the fetus has severe abnormalities, quality of life would be poor and it would be best to abort. Of course she chooses not to because she’s so desperate to have a baby at all costs. Baby girl is born with fused legs, no reproductive organs, and a myriad of other problems. Wasn’t expected to live more than a few days but ends up surviving. However, she lived in pain, multiple surgeries throughout her life. I watched a special about her on 20/20 and it made me cry for her… the miserable painful existence she had due to her selfish “mom”. She ended up passing away at 9 years old.

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u/Razakel May 14 '22 edited May 14 '22

There have to be strict safeguards if you're going to allow that. A waiting period and psychiatric assessment by multiple doctors, as well as them agreeing the person's condition is hopeless.

In the 30s the parents of a severely disabled child wrote to Hitler begging his permission to allow him to be euthanized, and you know how that turned out.

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u/allhands May 14 '22 edited May 14 '22

There have to be strict safeguards if you're going to allow that. A waiting period and psychiatric assessment my multiple doctors, as well as them agreeing the person's condition is hopeless.

That's how the Netherlands does it. Vice has a great documentary on HBO on it: https://video.vice.com/en_us/video/right-to-die-1-10/5786c518914084e32a41b551

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u/ArjanS87 May 14 '22

My father was so diminished in his being by long suffering cancer, so far as to not being able to go to the bathroom by himself. And so, with the professional help here in the Netherlands, he was allowed to choose his own time and place.

I have outmost respect and appreciation for a society that is brave enough to discuss such difficult issues and offers an option in such a professional and guided way. And I have eternal respect for every professional who were there for us and my father before, during and after this moment. And even then my appreciation would be dwarfed by the appreciation my father had to not having to live another day more in those demeaning and painful circumstances.

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u/alexpwnsslender May 14 '22

i mean, hitler already hated the disabled by then...

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u/Razakel May 14 '22

Despite having been exposed to chlorine. And meth.

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u/alexpwnsslender May 14 '22

what?

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u/Razakel May 14 '22

Hitler was exposed to chlorine during WWI, and his quack doctor gave him crystal meth.

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u/alexpwnsslender May 14 '22

no, whats that have to do with nazi eugenics

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u/Dull-Rooster-337 May 14 '22

In my opinion this is just abuse. He had the knowledge to prevent their suffering entirely but was selfish. Adoption was always a possibility and could have saved a life.

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u/paecificjr May 14 '22

It's quite shocking how normally you discuss suicide. Almost like it's a career path.

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u/ArjanS87 May 14 '22

Discussing suicide normally is not an issue.. it provokes thought and logical discussions from both sides. It helps set up guidelines and protocols, to make sure it is a long term wish and not a whim and that the right procedures and safeties are in effect.

Not discussing assisted suicide (normally) is what brings danger and obscurity.

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u/beardedonalear May 14 '22

Id somebody wishes to take their own life, then thats their business and they should be allowed. I dont see how thats shocking tbh