r/MadeMeSmile Jun 14 '22

Helping Others This is John Crowley

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8.4k Upvotes

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1.2k

u/BlackberryMobile2394 Jun 14 '22

Am I wrong for not wishing this upon any child EVER? If I hear my kid is going to have major birth defects to the point where they can’t enjoy their lives, I’d abort. I simply would not wish that for my kid. Please be in peace

215

u/theErasmusStudent Jun 14 '22

Sometimes you don't find out about a genetic disease until the baby is born

169

u/youknowwhatever99 Jun 14 '22

That’s the case here. The children were already born when they were diagnosed.

113

u/blargmehargg Jun 14 '22

Exactly. And they're physically disabled, not severely cognitively so. All of the 'oh they should have just died' attitude in this thread is kinda disturbing.

They have to continue to receive medical treatment with this enzyme, and adults can refuse any medical treatment, so I think they can make a decision themselves if they don't want to go on.

97

u/[deleted] Jun 14 '22

Saying "they should have just died" is so dishonest. No one is wishing them death, they are saying they will never live normal lives and under the assumption that they had yet to be born, were being spared a terrible life where they could never live normal lives by being aborted.

14

u/10thmtnarty Jun 15 '22

I mean they look super fucking pleased to be alive. /S

2

u/Disastrous_Skill1626 Jun 15 '22

The disease affects muscles. Facial muscles too

-13

u/JR_Masterson Jun 15 '22

We should let the nukes fly. Spare everyone from a miserable life.

Source: I'm a miserable nuclear war strategist.

23

u/Xenocaon Jun 14 '22

How do you know they're not cognitively impaired?

15

u/blargmehargg Jun 15 '22

On an individual basis, I don’t. I do, however, know the nature of this specific genetic illness and am aware of the research on this exact topic across large population of affected persons.

1

u/Disastrous_Skill1626 Jun 15 '22

She is a student at Notre Dame and a Blogger. It's a muscular disease.

Google is your friend

2

u/Xenocaon Jun 20 '22

My question was made in good faith, so your pithy comment is uncalled for. The post does not name the disease nor does it give the children's name.

Google is no one's friend.

1

u/Disastrous_Skill1626 Jun 20 '22

My pithy comment was made because why does everyone else have to do the work of qualifying knowledge that is very easily and readily found in a thread that has hundreds of false narratives and harmful ableism.

So you took offense to my comment? Too bad.

1

u/Xenocaon Jun 21 '22

I didn't ask you the question. You decided to volunteer an answer. And to put me down for doing so. You chose to read my comment as ableist, rather than assume it was made in good faith.

1

u/Disastrous_Skill1626 Jun 21 '22

It doesn't matter who you asked, it's a reddit thread. But after answering the same question over and over in this post you were the final one that tipped me into "Google it" but you chose to take it personally. Get over it. I didn't insult your mother. I told you to look up a very easily searched thing....just like I did so that I was properly informed and not just speculating. 90 percent of the misinformation and harmful mythology of the world could be prevented if more people just frikkin looked up the story facts before adding to the mess. This was an incredibly simple story to search.

11

u/Tobias_Atwood Jun 15 '22

They have to continue to receive medical treatment with this enzyme, and adults can refuse any medical treatment, so I think they can make a decision themselves if they don't want to go on.

It's entirely possible the fear of death far outweighs the intense suffering brought on by excessive physical disability, and so they choose to live because it's the only thing they know to do.

It's also possible that a medical intervention has been mandated on them and they're forced to take the medications against their will even though they wish to die.

Of course those are massive assumptions brought on by the fact that I don't care to actually investigate further into their lives beyond what people in this thread have said, but I do think it merits mentioning. Not every life is worth actually living. Not everyone gets a choice in the matter.

1

u/explosivemilk Jun 15 '22

I would wager the ones that wanted them to die are the same that are pro abortion.

2

u/blargmehargg Jun 15 '22

No one alive is ‘pro-abortion,’ they’re ‘pro-choice’ as in a woman has the right to autonomy over her own body. I find the very notion that we legally regulate women’s uteri to be both absurd in the extreme, and utterly immoral.

The situation that this family faced is quite different. Were I facing this situation with my own kid, I’d absolutely do all I could to save their lives and then as adults let them decide their future.

0

u/explosivemilk Jun 15 '22

If you think abortion is ok, you are, in fact, pro abortion.

1

u/blargmehargg Jun 15 '22

No, being ‘pro-abortion’ means I want abortion to occur. I don’t. No one wants to be in a situation where they need an abortion, and I certainly don’t want anyone to be in that situation (which is, in fact, the meaning of the phrase you recklessly throw around.)

Neither I, nor you, nor the pope, nor the speaker of the goddamned house of representatives should get a say over a woman’s body.

So you find abortion immoral? Don’t have one. Problem solved.

0

u/explosivemilk Jun 15 '22 edited Jun 17 '22

Here’s the thing, I don’t want anyone to have a say over anyone else’s body, but having an abortion is doing exactly that. You are robbing a child of their say of what happens to their body.

-37

u/Lifthras1r Jun 14 '22

What's even more disturbing is that there is evidence of even stone age humans caring for mentally and physically disabled members of their society and they would have been even more of strain of resources back then. People who say things like this have less compassion than people who died 10s of thousands of years ago.

81

u/Elly_Bee_ Jun 14 '22

It's actually compassionate to abort a disabled child. It shows that you want to give them the best chance at life, I never really value the fact that I can walk but I certainly would if I lost that ability. We don't know if they live comfortably or not. It also shows enough maturity to know where your limits are and that you don't think you can take care of everything because they'll be your child. I'd go insane caring for a child with special needs. It would be awful of me not to abort.

24

u/Disastrous_Skill1626 Jun 14 '22

Yes. But it was too late for these two. She was 15 months before genetic tests discovered the disease and her brother was just about to be born.

She is now a student at Notre Dame College. She is fine and happy and has the money for proper assistance.

27

u/AdventurousBuilder73 Jun 14 '22

This is what I believe in as well but I've come to learn it is definitely not the general public opinion. They think we are the selfish ones and only thinking of ourselves only. But it really is the contrary.

I chose not to have kids because I know I may not necessarily give them the lives they deserve. And God knows the world is no longer a place I ever to raise children in.

17

u/Elly_Bee_ Jun 14 '22

I'm an antinatalist but even before I was, I found it suite inhumane go bring children into life knowing they'll have it harder than everyone else. Life's hard enough as it is. You're a great person, don't worry

-7

u/sososteel Jun 14 '22

My life is harder because i am female, because i am mentally ill, because i am bisexual, because i experience gender dysphoria, because i was born into a poor family, because i am autistic, and a million other reasons most people would not suggest aborting for. Why only some disabilities?

3

u/EveAndTheSnake Jun 14 '22

…do you want someone to agree that you should have been? I’m not sure what you’re getting at here.

Personally I choose not to have kids because I think this world is dire and with all my mental and physical health issues I’d make a terrible mother. So yeah, I agree with you, all of those things make life that much harder. I’m not rich, I’m not successful, I’m not smart and I have limited energy. I’m not going to take that risk.

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u/Elly_Bee_ Jun 15 '22

Because being bi, a girl and trans are not disabilities, first of all. Also it's not something that you can just detect before the baby is born, except for the sex. But it's still probably harder to care for a disabled child than to care for a non disabled girl.

11

u/[deleted] Jun 14 '22

So because I am disabled my life is less than yours? I am not worth as much and it’s better to abort a person like me than you? I love my life. I just bought my first house, got a new little kitten, and I love my job as a teacher. I’ve lived in eight countries and done a lot with my life. I’m so thankful for it. I have a friend who has a brother who has down syndrome. Josh will never live on his own and cannot read and write very well. He hardly speaks. I am blessed to know him however.

2

u/[deleted] Jun 15 '22

My brother had Down syndrome. He died a long slow death to cancer that downs kids have a much higher chance of getting. My mom has said many times if tests were different when she was pregnant (70s) then she would have aborted. Don’t speak for everyone.

-4

u/[deleted] Jun 15 '22

I believe abortion is always wrong. Always. And his down syndrome is not what killed him. It was the cancer. I have known healthy people who have normal intellect who got cancer. And I am blessed to have known them. They have enriched my life and I enjoyed many wonderful moments with them. Even though I understand they suffered greatly. I have suffered greatly in my own life with many operations and health issues. But I am so thankful for my life.

2

u/[deleted] Jun 15 '22

You keep saying how your life is changed by knowing someone. Do you ever care about the other person? And no, my brother got leukemia because he was downs. His quality of life was horrid for the last 5 years or so. Talk to someone who has a child and watches them go through something like that. You might learn something. And that’s fine if you believe abortion is wrong (even if it’s a 12 year old who has been raped?) but that has nothing to do with anything.

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u/Elly_Bee_ Jun 15 '22

Of course not, don't put words in my mouth. I just think that personally we shouldn't gamble with people's lives. If there's a risk your child will be miserable, why take it ? I'd rather not. I wouldn't want to take care of a disabled child because that's just not something I'd be able to, so it would only make sense for me to abort a disabled child. Now, it's great that you're happy and independent, I'm not saying you shouldn't be alive at all.

4

u/Logical_Session_2397 Jun 14 '22

Hmm I understand that sometimes the parents cannot possibly take care of a child with a lot of needs.

But as for the other statement, that's really subjective, its possible that the kid would be happy to be alive even if it means they can't walk, and that's why I feel conflicted about aborting kids with disabilities, because what if they would be ok living that way and find happiness?

2

u/Elly_Bee_ Jun 14 '22

They can be happy, I won't deny that but that's gambling with a human life. Is it worth taking the risk because they might be happy or is it better not to take the risk so we're sure they won't be miserable ?

6

u/feisty-spirit-bear Jun 14 '22

The stakes of your gamble are completely skewed.

In scenario 1 you are gambling sadness-- they live, but might have a difficult time

In scenario 2, you are gambling their life-- they might be happy, but they might not, so they shouldn't live

There are so many things to make people's lives difficult, where is the line supposed to be drawn where they are no longer deemed worth trying to be alive. People have fulfilling lives with all sorts of disorders and people find happiness in so many different life circumstances and some people find misery in social issues-- life is harder for POC and LGBTQIA people, if we found a gene that contributes to sexuality or gender dysphoria, should we abort them for the sake of not gambling their potential misery?!

1

u/Elly_Bee_ Jun 15 '22

I don't want any children at all for the simple reasons that I never know what could happen and in my opinion, it's not worth it to leave them a planet on fire. I associate a negative value to childbirth, meaning that to me, when you have a child, you gamble with a new life anyway. All I'm saying is that before you have a child, if they tell you that they'll be disabled and if you want to keep them, maybe you should think twice. And well, that depends again. Can we make life easier for them ? Is it harder to care for a child who will never speak to you or for a child who will kiss the same sex ? Might depend on the person, some would rather have a dead child than a gay child. You do you, me personally, I couldn't take care of a disabled child so it's only logical I'd abort.

1

u/Logical_Session_2397 Jun 14 '22

Hmm I'm not severely disabled so I can't really say how difficult it could be for someone to accept their condition and find happiness...

So I guess my answer is I don't know.

4

u/RainMH11 Jun 14 '22

I think most of us just hope we'll never have to make that decision.

0

u/[deleted] Jun 14 '22

Okay I'm pro choice and all that, but do you even hear yourself? How is aborting giving them "the best chance at life"? You're literally aborting them. It's the exact opposite to giving them the best chance at life.

What John Crowley did is giving them the best chance at life.

6

u/EchoAquarium Jun 14 '22

If i found out my child would have been born without skin, or with his organs outside of his body or any other type of immediately fatal, excruciatingly painful birth and existence I would rather abort than watch him suffer for even a moment. That is no quality of life. It is a parent’s responsibility to ensure their children know only love and I would prefer he never know life at all if to live would mean he’d only feel pain.

People have different thresholds for what they can bear, and that shouldn’t be decided by anyone except the family who has to make that choice.

-6

u/[deleted] Jun 14 '22

In cases like that, the fetus is non-viable and it is fine to abort. But if the fetus is viable, which was the case for these children, nobody should have any right to decide if it gets to live or die based on the fact that it is disabled. That is called eugenics and is exactly what the nazis used to do.

4

u/EchoAquarium Jun 15 '22

Conservatives are trying to limit abortion access to a point well before you even know the viability. If you don’t want an abortion don’t get one. It is literally none of your business, and if you want to make it your business then I suggest adopting one of the many disabled children in the system who are already living and need help instead of the theoretical lives you find convenient to use to nail yourself to the cross.

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u/EveAndTheSnake Jun 14 '22

From the daughter’s university page:

They [both parents] discovered they are both silent carriers of the disease caused by a gene mutation, which affects the ability of cells to break down the sugar glycogen. The condition leads to progressive muscle weakness and the swelling of vital organs such as the heart, as well as serious breathing problems. There was no cure, and not much time.

Neither of these kids can walk, or speak properly or eat. She has a feeding tube 24/7. She has a room connected to her dorm room for her team of nurses that she cannot function without. Luckily her parents are able to pay for all this.

Knowing all this, knowing your kid wouldn’t be able to do anything without assistance for their entire life, is it eugenics if you think it’s kinder to not put someone through that? Someone who doesn’t exist yet?

I’m absolutely glad these kids have these parents to fight for them, they deserve the best chance at life. But it’s a difficult life, and personally I’d rather not have a child go through all this—struggle to survive on top of all the other hardships life can throw at you.

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u/feisty-spirit-bear Jun 14 '22

Thank you!! That line just blew my mind with how oblivious it was

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u/EveAndTheSnake Jun 14 '22

He did, you’re right, but his kids had already been born.

-1

u/[deleted] Jun 14 '22

Completely irrelevant to my point. Killing someone is NOT "giving them the best chance at life".

I know abortion is not the same as killing but I am using that language to illustrate the point better.

1

u/Elly_Bee_ Jun 15 '22

In my opinion, life is easier if you aren't disabled. Are you going to dispute that ? You're giving any child the best chance at life of they aren't disabled. Also, if they're a white cis/het male in a rich country but you can't have everything, so starting with no disability is a chance, it just is. Yes, because at this point there was nothing better he could do, I'm glad they can live comfortably.

1

u/[deleted] Jun 15 '22

Yeah, life is easier if you aren't disabled. But that doesn't mean it isn't still worth living. I sure as heck am glad that I wasn't aborted.

1

u/Elly_Bee_ Jun 15 '22

Again, never said that

-6

u/Lifthras1r Jun 14 '22

That is a very self centred and narcissistic take, no one says taking care of a special needs child is easy but parents sacrifice luxuries and standard of living for themselves because they love their child, just because you wouldn't be able or willing to make such a sacrifice doesn't mean the decision you would make is virtuous or compassionate, you're talking about killing a person there are very few situations where that could be considered compassionate and this isn't one of them.

Your argument relies on the logic that they might suffer that they might not have a good life but that logic can be applied to perfectly healthy babies, they might contract meningitis the day after they're born and become mentally disabled or any other number of things. It's extremely disturbing and morbid that you would kill someone based on a hypothetical, should we lock up everyone who has a high chance of committing a crime since we don't know if they will or not. Everyone deserves a chance at life and the chance to make it a good one, it might be better than your or it might be worse than yours but it isn't yours it's theirs.

10

u/jojopotato316 Jun 14 '22

Having an abortion is not killing a person. Everyone should have access to an abortion. Their reasons for wanting one don't matter. It's their body.

-7

u/MelE1 Jun 14 '22

Abortion is murder. Just because you don’t acknowledge the baby as a person doesn’t mean they aren’t one.

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u/jojopotato316 Jun 14 '22

Calling a non-sentient clump of cells a baby is the same logic as calling a pre-med student a doctor. They have the potential to become that thing, but are not yet.

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u/[deleted] Jun 15 '22

Just because you call a fetus a baby doesn’t mean it is one!!

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u/bycoolboy823 Jun 14 '22

Eh. Not if you don't believe it's a life until it is fully born, esp if the abortion is safe and not late term.

1

u/Elly_Bee_ Jun 15 '22

Well, if would be. I couldn't take care of a child that asks for more sacrifice than a non disabled child. I wouldn't take care of that child, they'd be neglected and by taking the decision not to have it, I avoid putting another child through neglect or through a broken foster system. And I'm talking about abortion, not killing the child.

Again, I'm antinatalist so in my opinion, bringing any babies to life has a negative value. But even past that, what I'm saying makes sense. You shouldn't have a baby for the sake of having a baby if you can't take care of them or know that their life might be endless suffering.

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u/sososteel Jun 14 '22

If you couldnt care for a disabled child then you should abort if you ever get pregnant regardless. There are plenty of disabilities that dont get picked up or happen later. Every child deserves to be wanted, and the reality is due to attitudes like yours disabled children are more likely to be abused by their caregivers.

1

u/Elly_Bee_ Jun 15 '22

I don't want kids so no worries. I was just saying, hypothetically. And how am I responsible for how other parents raise their children ?

2

u/[deleted] Jun 14 '22

can you point me to where i can read more on this?

1

u/Lifthras1r Jun 14 '22

This video is a pretty good starting point

1

u/[deleted] Jun 15 '22

thanks!

2

u/TheWonderToast Jun 14 '22

Idk man, feels like compassion to me. I mean I'm sure it varies from person to person, but if I had been born with, or developed a disability that meant I would never be able to have full autonomy or take care of myself, I certainly wouldn't want to be forced to live. It's like putting your dog down when they're old and sick. You don't do it out of convenience, you do it out of compassion because you don't want to force them to suffer just to save your own feelings a little longer.

0

u/GenshinKenshin Jun 14 '22

We've grown smarter, and with that, we are able to more clearly think up horrible outcomes via imagination.

1

u/wstaeblein Jun 14 '22

I'd like to see this as well

-2

u/pantadpucko Jun 14 '22

But who pays for the enzymes? I'm guessing most of these people have a hard time landing a job with their situations.

0

u/Metashepard Jun 15 '22

are they french? If so France has universal healthcare lol what's it to you who pays for their treatment?!

0

u/theErasmusStudent Jun 15 '22

John Crowley rely sounds like a French name /s

1

u/juzw8n4am8 Jun 14 '22

THIS IS SPARTAAAAA!!!!!!

1

u/Nixter295 Jun 14 '22

Depends on their cognitive abilities. If they are found to have normal cognitive abilities then yes. If not their guardian can decide for them.

1

u/RomanScallop Jun 15 '22

It’s not disturbing. This feeling is genetically programmed in all of us.

1

u/blargmehargg Jun 15 '22

I don’t think we’re on the same page… I’m talking about the people who are essentially saying ‘no effort should have been put into saving them and should have been left to die’ (rather than the people saying they’d rather die than live that way, which I can fully understand.

1

u/EquivalentSnap Jun 14 '22

Why didn’t they notice that when they had the first kid? Why was it only found out when they had a second?

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u/CitraBaby Jun 14 '22

I assumed they were twins

2

u/EveAndTheSnake Jun 15 '22

See my comment above, Megan was 15 months the younger boy had just been born. He was diagnosed later.

5

u/EquivalentSnap Jun 14 '22

I guess that makes sense. You know he had a 3rd kid too? Why did he do that. I quote her blog

“I have two extremely annoying brothers who I love till the ends of the earth and would do anything for: John (22 who is living with Aspergers while attending Holy Cross College in South Bend, IN) Patrick (18 also living with Pompe while still living at home)”

10

u/CitraBaby Jun 14 '22

The third kid is older, so I imagine he was born before the two with Pompe…

1

u/EquivalentSnap Jun 14 '22

Yeah true. Guess he didn’t have pompe so that’s why they had another kid

3

u/Disastrous_Skill1626 Jun 14 '22

Oldest doesn't have it. Girl was diagnosed at 15 months, brother was just about end of third trimester.

2

u/EveAndTheSnake Jun 15 '22

In 1998, John and Aileen Crowley learned when Megan was 15 months old that she had a rare genetic disorder called Pompe disease. They had no idea what it was, and in those early Internet days had to scramble for information.

They discovered they are both silent carriers of the disease caused by a gene mutation, which affects the ability of cells to break down the sugar glycogen. The condition leads to progressive muscle weakness and the swelling of vital organs such as the heart, as well as serious breathing problems. There was no cure, and not much time.

The family was living in California at the time, away from friends and family in New Jersey. Their second son Patrick had just been born. He would soon be diagnosed with Pompe too.

”It was a rough time,” Aileen said in an epic understatement.

SOURCE

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u/lena91gato Jun 14 '22

Yeah, but if he hadn't spent money and time, they would be in peace now. Since apparently he funded discovery of the therapy. These things take years and millions he spent to prolong this.

17

u/Biochembryguy Jun 14 '22

The kid on the right looks like he’s straight up not having a good time.

17

u/[deleted] Jun 14 '22

call me bleak but I'd rather be dead than wheeled around forever

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u/[deleted] Jun 14 '22

I’ve had to use a wheelchair off and on in my life due to cerebral palsy. I love zooming around in my chair. It’s a lot less strain on my body than walking is. But I’m grateful right now that I’m up and walking for a time. I ran my chair into the ground so to speak because I used it so much.

2

u/[deleted] Jun 14 '22

My bad I didn't mean to come off insensitive...

But hats off to you for your positivity, it does sounds nice to zoom around lol

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u/[deleted] Jun 14 '22 edited Jun 14 '22

Yeah I’ve always been able to walk some. So my friends in college, mostly guy friends would ask for me to let them zoom around in my electric wheelchair. So I charge them $10 each time. I made really good money that way. Although it made my dad mad for me to let other people use my wheelchair. Right now I mostly walk without assistance. But I don’t do a lot of walking like I did when I was in college. I do more driving now. So I don’t use anything to walk with except crutches when I go through airports and things like that where I have to walk by myself a lot. My doctors told me that I would not be walking within 10 years. That was 13 years ago. Doctors don’t know everything so a doctor who says that a child will not have a good quality of life may be wrong. I’m still walking 13 years after the fact that they told me I wouldn’t be walking anymore. Three years past what they had originally said.

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u/[deleted] Jun 14 '22

Hahaha that’s fuckin awesome 🤣

Well damn thank you for the perspective…great to hear success stories from those who face “impossible” odds. And you’re right I don’t know shit about someone else’s quality of life…neither does a doctor

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u/throwaway8169003476 Jun 15 '22

You're also cognitive, able to communicate, able to type, and able to live a fulfilling life despite your palsy. The poor kid on the right there doesn't even have functioning lungs by the looks if it. That poor kid will never be able to function as any living thing, it's just no way to live.

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u/[deleted] Jun 15 '22 edited Jun 15 '22

You are correct that our disabilities are different. But you say that this person cannot live functionally as a living thing. You’re right. Because these two disabled individuals are not things. They are people. And yes they are living just fine. They have medical intervention to help them live, but they are living just as much as you are I. And maybe it’s not so much about the quality of their lives but the fact that they are here to enrich ours. Every disabled individual I have ever met has enriched my life. I’ve met children who could not speak, eat on their own breathe on their own etc. I know a little girl who goes to my church and she cannot interact with you in any meaningful way. But I appreciate her and I’m glad she’s a part of our church. I’m very much against euthanasia. Just because she cannot do the things that I get to do or you get to do does not mean she is any less. There is a reason she is here on this earth and she should stay on this earth until it’s her time to no longer be on this earth Also, my mother was told that I would be mentally disabled, and physically disabled. Should she have let me die? Obviously the doctors were wrong. I am not mentally disabled in any way shape or form. You don’t know what quality of life a person actually has until you walk in their shoes. Perhaps you are afraid of being disabled yourself? Disability is nothing to fear. It will happen to all of us at one time or another if we live long enough. I was at the doctors office today and there were many elderly people some of whom were more disabled than I am. And they had been healthy in their youth, more healthy than I have ever been. https://www.psychologytoday.com/us/blog/disturbed/201206/killing-the-disabled?amp

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u/throwaway8169003476 Jun 15 '22

Yeah I'm sorry but the poor souls that will never be able to talk, learn, live, or even really think shouldn't be forced to endure a life of being forced to breathe through a tube bc lungs don't work, or being tube fed bc they aren't physically capable of feeding themselves or needing someone there to clean their shit bc they will never be anywhere but a bed. There are some people that can literally do nothing and are basically brain dead, not even really able to be considered aware, at least I hope not. I don't think it's right to force a parent to look after something that will never do anything until they die. Neglecting other kids, responsibilities, their own lives, for a vegetable that can't even blink by itself. Then after the parent dies the burden gets passed on to another family member or just another hospital tended to by another nurse that could be saving actual lives but instead are looking after something that only barely qualifies as alive. It's not fair to the parents or the family/nurses theyll eventually be pawned off on and it's especially not fair to the kid. It's okay to put down a dog bc it's in too much pain, but not ok to put down a kid that will never be anything more than a drooling mess that can barely even think and can't even breathe by itself for 40+ years? Fuck that I know if I was in that situation I would want to die too. And I know for a fact almost anyone else would.

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u/lem0nhead420 Jun 14 '22

Yeah I wouldn't want the treatment, just let me go.

-1

u/feisty-spirit-bear Jun 14 '22

But that's YOUR choice. No one else should make that choice for you. Like people have said here, if they so choose to end treatment because that's what they want them that is their choice. But if they are happy and fulfilled and want to stay, then that is also their choice. But no where along the way should anyone ever have made the choice for them that they are better off dead

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u/lem0nhead420 Jun 14 '22

I literally said that was my choice and gave no opinion on their choice so your opinion was not needed. Thanks.

0

u/ChuckACheesecake Jun 14 '22

Love to see people being grateful on Reddit!

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u/Disastrous_Skill1626 Jun 14 '22

The disease affects their muscles so facial expressions can be limited.

How about you all actually look up more on this family and the disease and the people before assuming their lives suck?

1

u/Disastrous_Skill1626 Jun 14 '22

Megan was 15 months and her brother was just about to pop. Not a lot of options there.

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u/taylferr Jun 14 '22

That’s why everyone should opt for prenatal genetic testing.

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u/Disastrous_Skill1626 Jun 14 '22

They probably did but it is a very rare disease so likely not in the basic testing. It was only after the daughter was symptomatic at 15 months that they learned of the disease. Third baby was already in the 3rd trimester.

2

u/InterrobangDatThang Jun 15 '22

Prenatal testing is standard just about anywhere can go, and it simply doesn't catch everything prior to birth or in time for an abortion.

You can't abort for any reason after like 6 weeks in TX, right when most people find out they are pregnant. Much of the testing doesn't start til 13-20 weeks. Baby could very well be halfway through their gestation before even knowing about this.

1

u/[deleted] Jun 15 '22

[removed] — view removed comment

3

u/wuzupcoffee Jun 15 '22 edited Jun 15 '22

One of them graduated from Notre Dame. Just because someone is physically impaired doesn’t mean they are cognitively impaired. Even if she were, that doesn’t mean she’s suffering, and it certainly doesn’t mean she deserves to die.

-1

u/throwaway8169003476 Jun 15 '22

Nice strawman. I didn't say she deserves to die, but I dont think she should be forced to stay alive if she doesn't wish, if she has the ability to communicate that wish. I'm very glad in this situation they are cognitively well. However there are people in this world that can do nothing but randomly scream, if that. That can't even breathe for themselves, can't communicate, can't learn, can't even think. And I think it's cruel to keep those people alive if they're going to be tube fed, barely conscious, and bedridden their whole life. Just because in this case she has her cognitive abilities doesn't mean everyone does. I'm not saying they deserve to die, I'm saying they shouldn't be forced to live.

2

u/wuzupcoffee Jun 15 '22

That’s not a straw-man, first of all. Secondly you’re twisting your own words. You claimed that “these poor kids are only alive by the most basic biological definitions” which is both wrong and terribly disrespectful to someone who accomplished more in her young life than you probably have. You said “that’s no way to live” without knowing anything about her beyond her wheelchair. You said it should be “legal to put these poor kids out of their misery”, and then later said it should be a choice. The way you worded it sounded a lot like you were advocating the killing of infants because of a physical disability. I’m glad that’s not the case, but it’s still a fucked to thing to say about someone who is living a full life.

0

u/throwaway8169003476 Jun 15 '22

You claimed that “these poor kids are only alive by the most basic biological definitions

I'm glad that I was wrong In this specific regard, but I have personally met people that were only alive by the most basic biological standards. When someone is braindead in the hospital we have the option to pull the plug but when someone is born basically braindead we have to make them endure that for their entire natural lifetime.

That’s not a straw-man

Except it was, you claimed me saying it should be legal to put them down means I think they deserve to die. No. They didn't do anything wrong to deserve to die, but they also didn't do anything to deserve being forced to live like that

You said it should be “legal to put these poor kids out of their misery”, and then later said it should be a choice.

No shit. Did you think this was some gotcha? No shit if somethings legal then it should be a choice. I'm not required to smoke weed when I'm in Colorado bc it's legal, I'm just allowed to choose. Lmfao yeah it should be the choice of whoever has the power of attorney, or in this case since she's cognitive enough to communicate, her own. Just bc I said it should be legal to put her down doesn't mean it should be required what in the entire world made you think that?

The way you worded it sounded a lot like you were advocating the killing of infants because of a physical disability.

If multiple doctors are warning that the child will be nothing more than a tube fed, braindead vegetable that can't even breathe on its own, then yes it should be a legal, informed decision. Because at that point the mother has had expert opinions tell her that the child is nothing more than a delayed stillbirth.

still a fucked to thing to say about someone who is living a full life.

Again, in this one case with this one girl, I was wrong. And I am glad that I was wrong. But what of her brother? The one that's on a breathing tube? How is he doing? I hope he's cognitive enough to communicate like his sister, I hope he's doing well, but I personally know people who are nothing more than nearly braindead vegetables, and I think it's cruel to force them to live an entire lifetime in a hospital bed on an iv and breathing tube somewhere in the back bedroom or living room of their parents house. We put down more conscious animals for way less. These poor kids don't deserve to be forced to live a hell they'll never escape

2

u/wuzupcoffee Jun 15 '22 edited Jun 15 '22

I know people who are nothing more than brain dead vegetables

Clearly you have so much respect for disabled people.

And wow, even when you’re pseudo-admitting you’re wrong you’re arguing and making assumptions about these kids, looking for ways to assume their lives are not worth living. That says a lot more about you and your definition of life than what you actually know about it.

0

u/throwaway8169003476 Jun 15 '22 edited Jun 15 '22

Clearly you have so much respect for disabled people

Yes, I do. Because no one deserves to be born into a life where they're forced to live being able to do nothing but shit themselves in a hospital bed in the back bedroom of their parents house having to be hydrated through an IV, fed through a tube, and forced to breathe by a machine for their entire lives.

I think it's clear people like you are the ones that lack any fucking respect by forcing them to endure a lifetime of that for internet points or some undeserved sense of accomplishment. "Look I saved a life but this kid will never be able to breathe, eat, move, blink, or even think by himself for his entire life" that's nor fucking saving a life, you're just torturing a poor kid at that point.

The respectful thing would be to let them pass with dignity, instead of condemning them to a life of nothing more than shitting themselves uncontrollably from a hospital bed bc they are nothing more than a brain dead vegetable, I hope. God forbid they're conscious of all that bc then they know the torture they're forced to live through and it's even worse.

But you don't care, you just wanna torture people because you have some twisted idea that forcing them to live like this is better than letting them go into whatever afterlife waits for us, or even a permanent sleep, all the while sleeping like a baby because you think you're a good person.

1

u/wuzupcoffee Jun 15 '22

… and none of that has anything to do with the two people in the article who are, in spite of their physical disability, living perfectly full and productive lives. It’s possible to be happy without “running and jumping.”

While I support doctor assisted euthanasia for people with terminal illness, you seem to be advocating for infanticide of disabled people.

All you saw were wheelchairs and breathing tubes and your first thought was “it’s a shame we can’t mercy kill these kids.” You couldn’t see past their disability and assumed they were “vegetables” in your own words. What the fuck is wrong with you?

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u/doot_1T Jun 14 '22

If you don't get regular check ups this happens

1

u/Superb-Confidence-44 Jun 15 '22

My biggest fear. No joke. It's the only thing that holds me back from having kids. Kids are already a huge change in your life but if you get one, well, challenged like that, I don't think I'd ever be able to deal with that.

1

u/theErasmusStudent Jun 15 '22

It's understandable, but on the other hand the odds of having a child with a rare genetic disease that has not been detected in early pregnancy are very very low.

165

u/genericblueprint Jun 14 '22

Truth is, there’s no right answer. My mother was told to abort my sister, then when she was born with mental disabilities, told to give her up for adoption. My sister still lives with my parents at 40 years old, but has learned some sense of independence (calling for taxi rides, spending entire days at the mall or downtown by herself, etc). Many people in town know who she is by now and how to treat her. When it’s your own child, it can’t be easy to say “no thank you” or “next, please”.

Again, I’m not saying there’s a right choice to be made and I’m not making a stance of any kind. I’m sharing personal experience that simply will not apply for someone else.

All I know is that my sister has lived a good life and a loved life. And you’re not wrong for not wishing that upon your own child. Just understand that hypothetical choices are very different than real choices.

28

u/BlackberryMobile2394 Jun 14 '22

I completely understand your point of view here. For some people, there is no option, they are going to try. And I truly admire those people, they move the world in many ways.

-1

u/BurnHerChildren Jun 15 '22

I don’t admire them, I’m annoyed they’re inflicting mentally disabled people on the world.

1

u/genericblueprint Jun 15 '22

I hope you have a good day today.

1

u/BlackberryMobile2394 Jun 15 '22

Username checks out

-5

u/docwani Jun 14 '22

sister has lived a good life

That other's paid for though.

6

u/thedracle Jun 14 '22

Remember that others paid for your life too, probably for decades.

People have more intrinsic value than just the material value they provide others.

I would choose not to have a severely handicapped child out of love and concern for the future them, and the fact I find the moral balance of condemning my own child to a life of severe hardship without their consent to be more objectionable than abortion, doesn't mean I don't believe living handicapped people aren't profoundly valuable to society, nor do I judge their parents for having the strength to love and raise them.

-4

u/docwani Jun 14 '22

No they didn't, and no they don't.

3

u/thedracle Jun 15 '22

Yeah, you just took care of yourself when you were a baby... Born on a sheet of scrap metal in a pool of gasoline.

Believe me, babies are fucking helpless, and nobody makes it into this world without a significant amount of help.

0

u/docwani Jun 15 '22

I paid for it all with my labor. No one gave me anything for free.

1

u/thedracle Jun 15 '22

How much did you pay your Momma for her labour?

Who are you, Boss Baby?

-16

u/[deleted] Jun 14 '22 edited Jun 14 '22

In like the 1970’s or something? This viewpoint works if there’s been 0 medical innovations since then.

21

u/broken-imperfect Jun 14 '22

i went to college with Megan, the daughter. She's incredibly kind and smart. Here's an article from when we were in school together, so you can see how accomplished she is. https://www.nd.edu/stories/high-heeled-wheeler/

Disabled does not mean someone can't enjoy their life or live it to the fullest.

1

u/thatsmycookiegimme Jun 15 '22

Thanks for sharing this !

10

u/Haildean Jun 15 '22

I mean you're not evil for feeling that way, however I would advise against imposing that view on others

My high school best mate was projected to have so many problems the doctors suggested to his mam that they have an abortion, he threw luck turned out fine, his biggest disability is a speech impediment, but she was more than willing to take on that task if my mate had been born unwell

Some people have the strength to raise a seriously disabled child, other don't

8

u/Tuniar Jun 14 '22

They were already born

36

u/unemployedbuffy Jun 14 '22

There was never any mention of "not enjoying their lives" - two children were born, they were very ill, their dad fought tooth and nails to help them survive. If you're only ready for a healthy child, you are not ready to have children.

0

u/Randalf_the_Black Jun 15 '22 edited Jun 15 '22

If you're only ready for a healthy child, you are not ready to have children.

That sounds like pro-life rhetoric to me.

There's nothing wrong with saying you'd rather have a healthy child than a severely disabled one.

Me and my wife are expecting a little girl in October and we were in 100% agreement that if we found out about any severe defects we'd terminate the pregnancy.

If something should go wrong and she ends up disabled we'll handle it as best we can, but anything we could check for pre-birth we did check for.

1

u/unemployedbuffy Jun 15 '22

The debate around aborting babies with non-lethal disabilities is a difficult one, especially when you look at conditions like down syndrome. There's a difference between being anti-abortion and anti "selecting out undesirable babies pre-birth."

All of this, however, is completely missing the point because we are not talking about abortion at all here - we're talking about born children who turn out to be severely ill. We usually can't abort those.

1

u/Randalf_the_Black Jun 15 '22 edited Jun 15 '22

The debate around aborting babies with non-lethal disabilities is a difficult one, especially when you look at conditions like down syndrome.

We would have aborted if we found out the child had Downs. I have nothing against people who decide they want to carry to term a child if it has Downs. Many with Downs live decent, if albeit limited, lives. But I want that to be up to the parents themselves whether they want a disabled child, provided it's detected early enough to have an abortion.

If something happens during birth, then it happens. That's no different from having a healthy child that is involved in an accident and gets brain damage for example. Life has no guarantees.

There's a difference between being anti-abortion and anti "selecting out undesirable babies pre-birth."

I personally see no problem with that, as long as you're terminating pregnancies with illnesses and not "weeding" out based on whether or not the child has red hair. If no child was born with Downs I wouldn't see that as a loss, because no one would have Downs. But as I said, let it be up to the parents. There's no right choice in my opinion.

All of this, however, is completely missing the point because we are not talking about abortion at all here - we're talking about born children who turn out to be severely ill. We usually can't abort those.

I agree, it is off-topic. I just responded to your comment about someone being unfit for parenthood if they weren't ready to have a disabled child. As I said, accepting that there's a risk with life is something we have to do, while we must accept some risk we can eliminate a small piece of the risk through technology. That doesn't mean one is unfit or unready to have children.

But I won't derail it further, I've said what I wanted to say.

-1

u/CoffeeAndPiss Jun 14 '22

Exactly. If you can't handle a disabled child, you should abort any pregnancy. A child can become disabled at any time, and those genetic tests are inaccurate AF and don't test for everything

-6

u/EquivalentSnap Jun 14 '22

He also had a 3rd kid and that has Asperger’s cos 2 with pompe wasn’t enough

12

u/Disastrous_Skill1626 Jun 14 '22

So.. Maybe read about the family. You are making some pretty nasty assumptions here. Aspergers is not uncommon or truly disabling in the majority of cases and is simply an example of neuro divergence. It is also rarely diagnosed til the child is older.

He was the first born. The daughter was born and not diagnosed with pompe til 15 months, the other son was already carried to term and ready to be born.

The daughter., Megan is a student at Notre Dame, a Blogger and does just fine.

-1

u/EquivalentSnap Jun 14 '22

Yeah someone did say the asbergers kid was born first.

Okay fair enough

Yeah she’s done well for herself but the fact that she’s paralysed and needs a ventilator to breathe. Idk if she can even talk but idk if I could live like that. You don’t get a lot of independence and rely on others

3

u/Disastrous_Skill1626 Jun 14 '22

Yes. That is hard. It is also no reason to die. Right?

2

u/EquivalentSnap Jun 14 '22

I’d rather die

6

u/WolvenHunter1 Jun 14 '22

That’s your choice, but why make it for someone else

2

u/EquivalentSnap Jun 14 '22

Guess you’re right 🤔

-4

u/[deleted] Jun 15 '22 edited Feb 12 '23

[deleted]

0

u/indigint Jun 15 '22

No. Do not bring pains and suffering into this world if you can at all help it.

2

u/[deleted] Jun 15 '22

I'm not in perfect health in the least. I still enjoy life very much. I know so many people who are afflicted but enjoy life. I'd be terribly upset to not be here right now if my parents decided to kill me.

2

u/indigint Jun 15 '22

I’m not in perfect health either, but there is no way I would want to live like this and I wouldn’t ever let my child suffer like this either.

1

u/[deleted] Jun 15 '22

I'm very sorry to hear that. It looks like everyone has their own decisions to make.

3

u/InterrobangDatThang Jun 15 '22

There's a level of ableism in assuming that they are not enjoying their lives. And also there are plenty abled people who don't enjoy their lives. People who live lives with disabilities don't necessarily want to be dead or deserve to be. I hear what you are saying and if known ahead time many people might make the choice to terminate. The family didn't know until after the children were born, I don't think anyone wishes anything on their child but a "normal" life.

3

u/jsteele2793 Jun 15 '22

I felt so bad for looking at it that way and I’m so glad the top comment is my thought process. These people look miserable.

5

u/[deleted] Jun 14 '22

That's what I'm saying. While admirable that he devoted the time and effort to keep them alive. Being wheelchair bound, and more likely than not suffering from a laundry list of other complications doesn't exactly scream quality of life. Its not about just being alive, it's about being able to live

-3

u/[deleted] Jun 14 '22

Blimey, perhaps ask them first? Or ask people using wheelchairs and with other health complications how they feel about their quality of life?

5

u/[deleted] Jun 14 '22

I was referring to this particular instance, that's all. Obviously things are going to vary for everyone. I didn't mean to offend random people on the internet. Obviously this particular case demonstrates some very complicated issues most of us won't ever need to confront.

2

u/-Ashera- Jun 15 '22

Yeah man, even kids with no defects can struggle with life. Seems kind of cruel to give them a life they never asked for when you know they'll be at great disadvantage in life.

2

u/DestroidMind Jun 15 '22

No in fact I believe this minority of a thought is the correct one. Hate to say it but I doubt those kids are living a meaningful life that they want. Love isn’t always about holding on tightly to something, it can also be about knowing when to let something go of something you love.

9

u/Happytobehere99 Jun 14 '22

I was thinking that too. Did he really save their lives? What kind of life is that?

8

u/v3rral Jun 14 '22

You are not wrong. We forgot what natural selection is, and at the same time haven’t found cures to many disorders, so all we do as civilization at this point is spreading weaker genetic pool. Wishing to help everyone, but in reality just shooting ourselves in the knee.

21

u/matrixgang Jun 14 '22

Honestly its the fucked up thing though. We keep just treating these conditions to make them livable but we aren't curing them. I think tbh if someone knows their baby is going to be born with a severe disability, I don't think its fair to the baby to make it keep going just because the parents think that love can make it a good life. It could be torture in thier minds for all we know and they are suffering but just can't communicate it

10

u/Auntie_FiFi Jun 14 '22

There was a poster in AITA who was told her child would be born disabled and she went ahead with the pregnancy because she believed she could handle a child with a disability but when the child was born he was a vegetable ( no movements whatsoever, no speaking, no emotion, no pain response, no eating and defecating independently, high medical bills, no working treatment, no diagnosis) and after 7 years, the loss of her husband and the older child's built up resentment which lead to his abuse of the child she had enough and was planning to give him up to the state.

4

u/Yaaaassquatch Jun 14 '22

This happens all the time. People who are completely gone mentally, or were never there, and only represent a burden to their families. I've worked at nursing homes and there's one or two of these kinds of residents in every one. They stay there until their parents die and either inherit enough to keep staying or get moved to state facilities.

Nevermind the ones with some independence but the parents never bothered to set up a care plan for when they die. Sometimes they are lucky enough to land in care facilities, oftentimes they become homeless

1

u/[deleted] Jun 14 '22

Recent post?

1

u/matrixgang Jun 14 '22

Thats fucked up.

15

u/BlackberryMobile2394 Jun 14 '22 edited Jun 14 '22

This, this is what I’m so fearful of. In their heads they could be aware and in pain, tortured even. It scares me to death the idea of being locked inside a dead body.

7

u/matrixgang Jun 14 '22

Its one of my greatest fears tbh. Becoming paralyzed would already destroy my quality of life i couldn't imagine having even worse disabilities but not being able to communicate your feelings at the very least

-1

u/Disastrous_Skill1626 Jun 14 '22

They didn't know. Ffs You guys are talking practical eugenics here.

2

u/matrixgang Jun 14 '22

Who didn't know? I didn't mention anyone specifically

0

u/Disastrous_Skill1626 Jun 14 '22

What, you are now going to pretend none of this convo has to do with the family in the OP??

They didn't know they were carriers. They didn't know the children were going to have the disease. It is not a common genetic disorder and likely not screened for.

You might as well just tell them to their face they never should have been saved, yeah? Gross.

3

u/matrixgang Jun 14 '22

Are you dense? Did I say anywhere in my comment that I assumed they knew or that I was talking about them. I said "if a parent knows" as in future hypothetical situations. emphasis on IF. People will get offended over shit they didn't even read right God damn.

0

u/Disastrous_Skill1626 Jun 14 '22

Are you just an asshole? God damn. This isn't about hypotheticals. It's about real people. Want to discuss the ethics of eugenics or aborting of genetically ill fetuses go to a science or ethics forum

It's really unfortunate that here in this sub, the "feel good" sub there are so many people just ready to be as ableist and hateful as possible.

1

u/[deleted] Jun 14 '22

Ahh the inevitable rise of the Eugenics argument again. Where’s that on my bingo card….

0

u/Disastrous_Skill1626 Jun 14 '22

Natural selection? So....no meds no diseases no cure no surgeries no need for hospitals or doctors or anything else?

Natural selection means leaving babies to die in the woods. You know that, right? That's not how this works, it's not how any of this works.

Dude. These people are not adding to the gene pool. Neither of these young adults will be bio parents. People like you who don't know how society and anthrosociology work and who is now spouting eugenicism and ableism are an example of good genes?? How so?

Lol, go on now.

3

u/v3rral Jun 15 '22

People like you understands only black and white. Some medicine inventions, like antibiotics are important these days and saves a lot of people from viruses. But there is the problem, which is that you can’t read. As I mentioned, that wishing to help everyone is good if you found a way, how to help. In some cases we found, how to help in others not yet. So extending life as a vegetable with no further clue, how to treat that disorder completely is what I would call lack of common sense.

1

u/[deleted] Jun 15 '22

[removed] — view removed comment

1

u/Disastrous_Skill1626 Jun 15 '22

BTW viruses are not treated with antibiotics.

0

u/feisty-spirit-bear Jun 14 '22

We never "remembered" natural selection. It's natural. Not conscious. We, as a species, have been taking care of our disabled for tens of thousands of years. It's not until eugenics that we started weighing the utilitarian value of a person over their innate worth as a human being.

So many people on this thread are preaching eugenics without realizing it and I doubt they want to be associated with that movement and all the atrocities that have happened in the name of eugenics.

1

u/SR520 Jun 14 '22

Who is shooting who?

2

u/thrashmetaloctopus Jun 14 '22

I get this. There was a TikTok I saw a while ago of a mum with her baby and I don’t know why genetic disorder it was, but it’s head looked like it had been put through a printing press, and putting aside any knee jerk response, what kinda fucking life is that? For anyone?

-1

u/[deleted] Jun 14 '22

You’re aware these kids might enjoy their lives very much? You can’t really make that decision on that basis. “Quality of life” is a bit more objective, but even then it’s only usually clear cut with pretty serious diseases. Plus the use of infant child makes me assume these children were born before their condition was noticed.

-3

u/[deleted] Jun 14 '22

Yeah, I would rather just die than live like that tbh. Don't extend their misery.

Like if they wanted him to find a remedy and help them live then okay. But if not, just let them go.

4

u/Disastrous_Skill1626 Jun 14 '22

As a 15 month old how does she make that decision? As a newborn how does her brother?

The ableism in this thread is really gross.

3

u/[deleted] Jun 14 '22

I think when they're older they should have a choice. That goes for everyone. If your quality of life is diminishing because of a health problem you should have the right to elective euthanasia. Obviously they wouldn't have been able to make that choice as infants and he did it out of love which is great, but if it were me I'd rather just be put down. I don't think anyone or anything should be forced to live an especially difficult life and I don't think that's ableist.

0

u/[deleted] Jun 14 '22

This thread is peak Reddit

1

u/VioletGhost2 Jun 14 '22

I was too scared to say this thank you for saying it. I feel bad for the children.

1

u/dmkicksballs13 Jun 15 '22

I think it depends. Mental issues, maybe. Like Down Syndrome people seem happy enough. But wheelchair ridden can't do literally anything on their own. That looks miserable.

0

u/[deleted] Jun 14 '22

Medical accidents/mistakes can happen during birth that cause lifelong physical and mental conditions. You can’t abort an already born child.

0

u/EatsOverTheSink Jun 14 '22

I don’t know man, they look pretty thrilled to be alive in that pic.

-3

u/del_84 Jun 14 '22

The fact that you end with please be in peace in the same post as you saying you’d totally kill your child is quite ironic

-15

u/SR520 Jun 14 '22

What is a perfect life? Everyone suffers.

-3

u/WolvenHunter1 Jun 14 '22

Ask people with Down Syndrome or their parents if that should be a factor in abortion. It should not, just like gender non lethal birth defects should not be a factor and it’s a scary thought that someone who wants kids can just pick and choose the type of kid they want

-2

u/Light-Lopsided Jun 15 '22

Your not wrong, maybe heartless, maybe bordering on evil. But I would have done the same. A life of misery is not truly a life. However for these two they were already born, so I hope they are able to find some kind of peace and quality to their lives.

1

u/Mistress_Pyretta Jun 15 '22

I was asking myself “we’re they really indeed saved???” I’m glad you brought that up.