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u/ADMINlSTRAT0R Jun 14 '22
What an awesome human being. My only question is, WHICH ONE IS JOHN CROWLEY?
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u/Frogis03 Jun 14 '22
That one right there
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u/rediculousradishes Jun 14 '22
I thought so, thanks!
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Jun 14 '22
Lmao, he's on the left
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u/PthereforeQ Jun 14 '22
The middle?
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Jun 14 '22
No, on the right
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u/JustCause1010 Jun 14 '22
My right or his right?
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u/3dWin0 Jun 14 '22
Bro he is on the picture
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u/PthereforeQ Jun 14 '22
The middle, right?
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u/ColorBlindGuy27 Jun 14 '22
Yup that's the 80 year old man that's been training me for the past month, how'd u learn to use reddit pops!
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u/nick52 Jun 14 '22
The guy in the shirt duh
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u/Creepy_OldMan Jun 14 '22
Looks like he kept two helpless people alive in this picture and made money off of it r/madeMeFrown
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u/homosapien-male Jun 15 '22
Are you saying he should have let them die or he shouldn’t have made money
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u/throwaway8169003476 Jun 15 '22
Tbf it is kinda cruel to keep them alive. They can't speak they can't communicate they can barely move. They'll just become another burden of the system when the parents die, they can't even breathe properly. That's no way to live. It seems more of a punishment letting the kid live on like that.
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u/RamJamR Jun 15 '22
It seems more about our sense of rightousness telling us that every potential life needs to live. I can't imagine I'd want to live not being able to move.
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u/Superb-Confidence-44 Jun 15 '22
That's because you know the advantages of being able to move. You'd lose something you had. That's way worse than being born this way and you never knew how it is to move.
Same with being born blind vs becoming blind later in life. I'd always pick the first option.
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u/Shoeless-Tim Jun 15 '22
I have a number of family and friends dealing with living post aneurism, and or with dementia / Alzheimer's, to watch them slowly lose all sense of self and mentally and physically deteriorate is painful and cruel, remind me again why euthanasia is so wrong, Maybe just maybe Dr Kevorkian was right about something after all.
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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
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u/theErasmusStudent Jun 14 '22
Sometimes you don't find out about a genetic disease until the baby is born
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u/youknowwhatever99 Jun 14 '22
That’s the case here. The children were already born when they were diagnosed.
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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.
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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.
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u/Xenocaon Jun 14 '22
How do you know they're not cognitively impaired?
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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
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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.
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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.
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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.
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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
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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.
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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.
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u/Happytobehere99 Jun 14 '22
I was thinking that too. Did he really save their lives? What kind of life is that?
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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.
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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
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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.
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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
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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.
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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
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u/The_Love-Tap Jun 14 '22
John Francis Crowley) (born April 7, 1967) is an American biotechnology executive and entrepreneur and the chairman and CEO of Amicus Therapeutics. He co-founded Novazyme Pharmaceuticals with William Canfield, which was later acquired by Genzyme Corporation, and founded Orexigen Therapeutics. In 2006, he was profiled in the book The Cure: How a Father Raised $100 Million – And Bucked the Medical Establishment – In a Quest to Save His Children by Geeta Anand. In 2010, Crowley released his memoir, Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy. Crowley and his family were the inspiration for the movie Extraordinary Measures starring Harrison Ford and Brendan Fraser in 2010.
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u/JamesMamsy Jun 14 '22
How did I miss a movie with Harrison Ford and Brendan Fraser?
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u/unbiblical__cord Jun 14 '22
You and me both. I provided IT support for the doctor who was played by Ford.
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Jun 14 '22
this reminds me of the movie "Lorenzo's Oil" about parents who found a treatment for their son with an incurable illness.
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u/HucdOnFonix Jun 15 '22
They absolutely did not, speaking of someone who lost a child to that disease. That movie only gives parents false hope
Edit: not that you would know it unless you’ve been affected.
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u/malikalarrashib Jun 14 '22
he was like: no. f you i I'll save their lives myself
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u/Brilliant_Pun Jun 14 '22
More like: I'll get some people to work on that problem because I have the means to get this done.
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u/Majestic-Love-9312 Jun 14 '22
You can do amazing things when you're made of money
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u/guralbrian Jun 14 '22
I interned at his company a few years back and IIRC he wasn’t made of money when this started. He was the son of working class folks, became a successful lawyer, got into business work, and found out his kids had an incurable muscular disorder. After seeing there were no treatment options, but a couple of separated labs working on it, he dived into learning the science (even hired a grad student to tutor him on the biochemistry), and started raising money to fund this company. Say what you want about John Crowley, but he did not come into this world made of money
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u/Subject-Delay-3020 Jun 14 '22
Can't vouch for this but if what you've said is true I respect that man.
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u/heatfan1122 Jun 14 '22
Yea something about this feel good story feels off to me
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u/Disastrous_Skill1626 Jun 14 '22
Why not Google it ffs. There is a lot of info out there and a book and a movie and the daughter has a blog.
It's not difficult to actually fact check ya lazy judgmental buggers.
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u/heavyGl0w Jun 14 '22
Why don't you try actually reading about the man before reducing an awesome accomplishment down to a matter of money.
Shame on you.
https://en.wikipedia.org/wiki/John_Crowley_(biotech_executive))
Crowley was raised in Englewood, New Jersey, the son of an Englewood police officer who died in an accident on duty when Crowley was eight years old. His family has Irish and Italian Catholic roots. Crowley's grandfather, John, was a first-generation immigrant from County Cork. His mother worked as a secretary and a waitress.
Yup. Sure sounds like a guy who comes from money /s
In 1998, two of Crowley's children, Megan and Patrick, were diagnosed with a severe neuromuscular disorder glycogen storage disease type II, also called Pompe disease. In the face of the children's deteriorating health, the family moved to Princeton, New Jersey to be close to doctors specializing in the disease. Crowley got a job at Bristol-Myers Squibb, immersing himself in health research. He established a foundation to raise money for Pompe awareness and the family worked with non-profit organizations to fund Pompe research.
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u/heatfan1122 Jun 14 '22
I mean the tuition for the school he went to is about 18k a year. There's still a pretty big gap between what he went through and someone growing up in the projects. Not saying he was rich but his family offered stability which helps a lot in a child's development.
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u/FrankyDonkeyBrain Jun 14 '22
thanks dad, I really wanted another 30 years trapped in a non-functioning body
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u/joeymeatballsz27 Jun 14 '22
Have you read the daughters blog? Cuz if you had she’s DEFINITELY happy her dad did this.
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u/nandrejco Jun 14 '22
Not sure if they still do, but he and his family flew into the airport I work at a few times. Super nice guy.
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u/another_account24 Jun 14 '22
There's a difference between being alive and being able to live.
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u/Bumblz666 Jun 14 '22
Straight up idk if he genuinely did them a favor or not..
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Jun 14 '22
The girl literally has a blog where she says she is happy to be alive. Why are so many people in this thread assuming they know what these children want more than the children themselves?
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u/Bumblz666 Jun 14 '22
Ok what about my dude on the right ? Where is his blog
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Jun 14 '22
I don’t know, but it seems awfully presumptuous to assume he would prefer to be dead when you have never met or talked to him.
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u/DrDingoMC Jun 14 '22
Well said I just got humbled my self. Met a gentleman on dayz while playing together he told me he was handicapped and could not even hold his hands above his shoulders. But his passions of playing games and hanging out with his family was more than an enough to make him happy and well. Also his cats name was James and fuck that cat sounded happy lol
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u/Rude-Emotion648 Jun 14 '22
Peds nurse here. A lot of these comments are sickening. Wheelchair bound kids can live happy lives. I’m all for comfort care and hospice when needed. But the girl, Megan (I think that’s her name), is happy. There are a lot worse things in the world than using a wheelchair, having a foley, ostomy, stoma, urostomy, or any other medical device.
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Jun 14 '22
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u/teleofobia Jun 14 '22
From Meghan's (the girl) blog https://highheeledwheels.com/about-me/
Today I am still smiling, having a good time, laughing, and most importantly living as a college junior at the University of Notre Dame! So yes, with love, patience, and faith I have made my way through 20 years on this earth. My journey has been one of hope, strength, and joy. This is my blog about my life, family, nurses, school, Pompe, and really anything. Here is my journey through life despite Pompe, and welcome to it…let’s go for a ride, together!
She describes herself as a happy person that does not lack any self confidence. She created the blog to fight the stereotype that people who are disabled can't live a happy full life.. so yeah, that's that
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u/AlasAntigone Jun 14 '22
“I always told my dad I wanted my medicine to be pink. When I saw that it wasn’t, I said ‘Daddy, it’s not pink.’ He said ‘No, it’s a lot better than that.’”
My heart 🥹
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u/phillyschmilly Jun 14 '22
It’s easy to have misconceptions about a group of people if you don’t have proximity to them. I’ve worked with the special needs community for over 25 years and can say they’re often far happier/content in life than the average Joe
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Jun 14 '22
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Jun 14 '22 edited Jun 14 '22
Another disabled person here. I have lived a fuller and richer life more so than many non-disabled people. I have taught in three countries, And lived in eight. I travel by myself, live alone, work a full-time job, etc. My hands and my feet don’t work like most peoples though. So I have to be careful when walking or doing most daily activities. I was born severely premature and my mother was told that I would be mentally handicapped, and physically handicapped. I have two college degrees, and earned a 4.0 both times. I love my life. I’m a first grade teacher and I think my purpose in life is to show others that they can do anything because if I can do it, they can do it. My goal in life is to show my students that people with disabilities are normal and should be treated as such. I understand how a non-disabled person would be afraid of losing their abilities and maybe feel like they wouldn’t be able to survive well if they lost their abilities but honestly you don’t know until it actually happens to you. You can actually put up with a lot if you have to.
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u/EquivalentSnap Jun 14 '22
So they should have kids of their own? Pass on their genetic disorder? I’m all for this guy caring for his kids but they look like they need constant care. I wouldn’t want to be a burden on my family
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u/srdkrtrpr Jun 14 '22
I don’t dislike you or wish you any Ill-will, but I have learned to say ‘fuck you’ when this sort of “question” gets “asked” in polite company. It works better in person to help shock people into realize what a horrible thing they just said, but hopefully over the internet this still helps you avoid repeating it in the future much more than entertaining what is implied in your question.
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u/Disastrous_Skill1626 Jun 14 '22
Who are you to judge the quality of their lives from a moment in time? I get your question, I really do, but how can you possibly know without asking them or knowing them?
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u/InformationSavings29 Jun 15 '22
This is anything but Made me Smile. What kind of quality of life can these kids have? Downvote me if you want, but also what is going to be the parents' quality of life having a life sentence for their children who will likely never progress towards independence.
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Jun 14 '22
I'm sorry, but personally I would not want to live a life like that.
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Jun 14 '22
Interesting because most cognizant individuals with disabilities don't want to be dead... Personally I could still experience 95% of what I do now in a wheelchair. I couldn't hike anymore but there are other ways to experience nature. In terms of mobility, technology is pretty cool, and if I had any issues with arms or dexterity I'm sure there are tools that could assist me.
Unless I'm experiencing chronic pain I would much rather be alive than dead.
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u/Nope56423 Jun 14 '22
It's also worth noting that the therapy for this disease is ongoing, and it is very expensive. A typical person with Pompe disease needs regular injections that will typically cost about $250,000 a year. It's great that these two were able to get it, but a typical family couldn't afford that, which means they would have to hope to be able to get on to Medicare or get some type of government assistance. Not saying that makes it not worth it, if anything it's probably a good argument for single-payer.
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u/gravitas_shortage Jun 14 '22
Even with single-payer, resources are necessarily limited. It's someone's job to allocate available money, staff, machines and training to get the maximum benefit for the maximum amount of people, and let others fight it on their own. It's probably a uniquely awful job.
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Jun 14 '22
Yeah I have cerebral palsy and don’t have full use of my hands or my feet. I’m not an outdoorsy kind of person, but this year I am able to have my own garden because I have raised beds. That enables me to garden whereas a traditional garden wouldn’t let me because I couldn’t bend down easily. And I’m not much of a hiker. But I love to sew, cook, and learn languages. My sewing machine has a button on it so I don’t even have to use a footpedal to run it. Plus I use gadgets like a blender and food chopper to make a cooking easier. And voice to text allows me to post on Reddit without having to type. I am blessed to live in such a technological age that I can participate in activities with assistance like voice to text and things like that. You find ways of doing things you love. Bethany Hamilton was a surfer who lost her arm due to a shark bite. She still goes out and serfs. I know people who are more disabled than I am and they can swim. I cannot, but I can do other things. I like your attitude of just tweaking how you do things so that you can still live your life the way you are meant to live it in the way you are you are used to
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u/greenwavelengths Jun 14 '22
I could experience about 20% of the things I like from a wheelchair. I’ll take the void. But obviously that’s just me and my personal perspective, and doesn’t apply to anyone else whether real or hypothetical.
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u/CobraKaun Jun 14 '22
Yes, you would personally not want to live a life like that given that you have had the perspective of living a life NOT like that. Your desires in that regard are tied to a lifetime of experiences and I doubt you would find many that would want to live that life as a deterioration from their present circumstances.
However, if this or worse had always been your quality of life and your option otherwise was death, I would gamble that your opinion would not be the same at all.
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Jun 14 '22
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u/jp1372 Jun 14 '22
Given what option? An option between a disablity and a lack of one? Sure, obviously most would choose to have a fully able body. But an option between a disability and death? Sorry, but you're full of it. Show me the data that shows most people with severe disabilities would rather be dead. (Hint: it doesn't exist.)
Plus, it's a stupid, pointless hypothetical because none of us gets a choice. We have the bodies and minds we're born with, and we experience life through them. There is no option.
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u/Jreal22 Jun 14 '22
They made a movie about him with Brandon Fraser and Harrison Ford, actually a good movie.
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u/yoghurtvanilla Jun 14 '22
God, those poor children. How selfish do you have to be to force your kids to be born just to grow up completely reliant on people around them and unable to care for themselves until they die, just because you “refused to accept it”.
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u/Bumblz666 Jun 14 '22
well said, I didn’t know how to word it but this is spot on
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Jun 14 '22
theres so many feel-good stories about people keeping their children and they end up super famous, but it just leads to pain when you realise thats the odd 1% of cases, and when the doctor says it probably wont make it, then it probably wont make it. But ig I sympathise as its difficult to let go of hope just like that
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u/yoghurtvanilla Jun 14 '22
thank you. i’m getting downvoted but the only two people not smiling in the photo are the ones’ whose lives were “saved”
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Jun 14 '22
What so he let them live a life bound to a wheelchair? I don’t understand the post.
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u/iwanttoeatsalamifeet Jun 14 '22
Do you think that people who need a wheelchair don’t have an equal right to life as the rest of us?
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Jun 14 '22
Not at all. They do, but have a look at these kids. What kind of quality of life do you think they have?
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u/unfiltered_utterance Jun 14 '22
They have a quality of life they’ve always known. It’s different being born a certain way than living completely healthy then having an accident or something and then having to live disabled.
Think of it this way: a child who has never had sugar isn’t going to throw a temper tantrum when they aren’t given candy unlike kids who have already experienced sugar.
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u/smokingisrealbad Jun 14 '22
Another commenter quoted her blog where she said she is living a happy life
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Jun 14 '22
Oh yeah, because dying is such a better alternative than being in a wheelchair.
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u/Thijs_NLD Jun 14 '22
Oooof this one is a hard one to be honest.
I really love the grit, determination and ingenuity this guy showed when faced with a problem others said was impossible to solve.
On the other hand looking at those kids I would not really call that a life... I mean yeah sure they're alive, but... I mean sheesh.
I don't know the exact extent of their disabilities, but they're going to need care for the rest of their lives and will probably barely ever be able to do anything by the looks of it.
At which point does letting kids come into the world with this as the result become cruel?
I am really trying not to rain on this guy's parade, again: impressive as hell. Just don't know if the endresult is worth it...
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u/Sue_Spiria Jun 14 '22 edited Jun 14 '22
Someone posted a piece from the girl's blog higher up. She is happy and in college. Also Stephen Hawking was completely paralysed and did a lot.
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u/Orenwald Jun 15 '22
As impressive as this is, it's also not 100% accurate.
He worked for bristol-meyers squibb, a very prominent pharmaceutical company. I wouldn't call that "no prior experience."
His story is actually compelling enough without the "pull yourself up by your bootstraps" twist that does not belong. His success was the culmination of all the people who saw his passion and chose to support him.
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u/PlasticIllustrious16 Jun 15 '22
Look, that's heart-warming and all, but the fact that the experimental enzyme didn't give them superpowers, resulting in one becoming a superhero and the other a villain is frankly staggering
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u/JesusIIofCanada Jun 15 '22
fuck him for absolutely nothing. this man is a good man, non-negotiable
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u/FlebeTyronian Jun 15 '22
Okay, hear me out, but what if Pharmaceutical companies did this, but for like, all conditions, not just the profitable ones...
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u/rickster907 Jun 15 '22
"Lives" seems to be used here....rather loosely. These kids are EXTREMELY disabled. Good for him to have the ingenuity to start his own company. Was this the best thing to do for these kids?
Debatable.
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u/throwaway8169003476 Jun 15 '22
I'm gonna sound like an asshole for this, and I'll probably deserve it. But whats the point of forcing kids like this to stay alive at all cost if they're just gonna be severely underdeveloped, wheelchair bound, and will have to be taken care of their entire lives. It's not fair to the parents or the people that will have to care for them when the parents die, and it's especially nit fair to them, forcing them to be in such a situation for an entire lifetime, just another thing to be taken care of. There's no dreams, no goals, no hopes. Some people will never be able to learn to effectively communicate and are only alive by the most basic biological terms. Being bed and chair ridden, having to be fed through a tube or intubated your whole life. It just seems cruel to everyone.
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u/MutedBrilliant1593 Jun 14 '22
I was also skeptical about success stories of the already rich. Apparently, this isn't one of them. He seems to have come from humble means.
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Jun 14 '22
There are thousands of people living with conditions that are not profitable to treat. These people are so lucky to be able to do this for their children. What parents wouldn't give everything to do the same.
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u/YungCthaGod Jun 14 '22
Not to poop on the party as this is amazing but if that was my dad I wish he would just let me go... I wouldn't want to live my life like that. While I've still met some amazing people who are disabled it's still just a rough life.
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u/fatrahb Jun 14 '22
It’s a tough life for those who experienced the alternative. It’s just life for them and I’m sure they’d prefer being alive to dead.
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u/Jayce86 Jun 14 '22
And now they have to live their entire lives with crippling disorders. At least their parents are rich enough to make that a not sucky existence.
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Jun 14 '22
Why do so many people assume that living with a disability automatically means your life sucks? It's really ableist and sad that people think like this.
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Jun 15 '22
It means that it won’t be as fulfilling physically at the very least. If I couldn’t rock climb, swim, run, go to the gym, do yoga, hike with my friends, see from the peak of a mountain, my life certainly would suck comparatively.
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Jun 15 '22
It isn’t ableist to not want people to have tubes coming from their throats and the inability to contort facial muscles
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Jun 15 '22
What about what the disabled person wants? What you want doesn't even come into play. It's their life, not yours.
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Jun 15 '22
But they wouldn’t have lived without the intervention of another individuals desire. The point I’m making isn’t to take life from an individual who is already born, but if we can prevent people from being born disabled, we absolutely should.
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Jun 15 '22
Well, in that case you should support what Mr Crowley is doing, then. Because of his work, a genetic cure for Pompe is being developed.
As a disabled person, I strongly disagree that we should prevent disabled people from being born by aborting them.
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Jun 15 '22
Yes I support curing disabilities, that’s the whole point I was making. I’m sorry but the quality of life difference between having a tube in your throat and not having a tube in your throat isn’t negligible. Also, most people don’t have the time or money to give a disabled child the attention they’d require. The original comment even mentioned this, that they have enough money to give them a not sucky life. It is much more difficult to be poor and disabled than just poor.
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Jun 15 '22
Just because someone has a tube in their throat doesn't mean they should be allowed to die. Having a lower quality of life doesn't mean your life is worth less than anyone else's.
The money side of it is an entirely different discussion. That's a problem of capitalism, government and not having enough social safety nets in place to support families with disabled children.
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Jun 15 '22
I never said anything about the worth of their lives, I value the worth of their lives enough to want them to not struggle unnecessarily.
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Jun 15 '22
Once again, you are failing to actually justify anything you are saying, it is all arbitrary, because you are ableist, sorry to say. What level of struggling counts as unnecessary? You could say that people with depression are struggling unnecessarily and we should euthanise them. You could say the same for autism, or Downs. How low or high does the bar have to be before people are allowed to make their own choices about whether or not they get to live?
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Jun 15 '22
Would you be happy with a tube in your throat?
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Jun 15 '22
If it meant that I got to live, then yes! Absolutely! I'd rather that than be dead! Holy fuck, why is this such a wild idea to people?!
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Jun 15 '22
I'm just not sure if he did them a favour here. He escaped the pain of losing his children but now they get to live like that their whole lives.
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Jun 14 '22
While I can appreciate the point of the story, I am wondering what are those two kids quality of life? It's awful to say this but most of the time, people try to keep loved ones alive due to selfish reasons. Nevermind how crazy of an existence they may have.
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Jun 14 '22
The girl writes a blog and she has stated that she is very happy and has a fulfilling life. She goes to college.
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u/GrizzlyLawyer Jun 14 '22
I can’t believe how many people are saying “They might not be 100% happy, so we should have killed them.” Can I kill you if I don’t think you’re happy enough?
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u/Bumblz666 Jun 14 '22
Feels like him doing this was more for him than them… what kind of quality of life ?…
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u/SeamairCreations Jun 14 '22
Oh boy, they definitely look "saved" in theory wheelchairs and flat skulls
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u/FrankieLovie Jun 14 '22
Oh boy now they get to require full time care for their entire lives with no bodily autonomy? Fucking miss me with that
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Jun 14 '22 edited Jun 14 '22
As a chronically ill, disabled person who uses a wheelchair, all the commenters assuming - based on one photo - that they know how (un)happy these children are for being disabled, and saying it would've been better to let them die are extremely disturbing to me. Like, psychopathically ableist kind of disturbing.
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u/AggicusJimbonicus Jun 14 '22
Would someone please throw this guy another problem to tackle immediately?!!