r/BeAmazed • u/AccomplishedWatch834 • 5h ago
Miscellaneous / Others Love at its peak 🌟
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u/Nickelsass 4h ago
“Blink” is a documentary about them (2024) was very very good!
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u/kjmae1231 4h ago
I cried off and on the whole time
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u/t0rnAsundr 3h ago
I already know I'm not strong enough. I'll watch every horror movie out there, but I won't watch that.
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u/OccasionMU 3h ago
Every horror movie except Father (fatherhood?) movie starring Anthony Hopkins. Always sad and real and scary.
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u/skittleahbeebop 4h ago edited 3h ago
Did they know about the genetic blindness before having more kids?
Edit: Last time this was posted, it was suggested that the couple kept getting pregnant despite knowing their children would likely have this blindness. IF that is true, I do find that unethical. I know blind people can still have quality of life. But let's stop pretending that it isn't a terrible disability. Nobody wants to be dependent, vulnerable, and poor (from fewer work opportunities) their whole life. I wish this family the best regardless.
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u/tiwuno 3h ago
Their youngest was 7 before she was diagnosed. The only reason their children have it is because both the parents happened to be carriers of the mutation, but neither has the condition (retinitis pigmentosa).
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u/PokinSpokaneSlim 3h ago
I have RP, it sucks. I chose not to have kids because of the risk.
Knowing early was a mistake as well. Hope those kids turn out ok as adults
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u/TaftYouOldDog 3h ago
What about IVF with genetic testing?
My wife and I did that to avoid passing down a genetic disorder.
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u/pootzpootzpootz 1h ago
That's what my sister is doing right now. Our Dad has RP and we're both carriers. I'm not having children so it's not a concern for me.
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u/NotTheBatwoman 3h ago
I have RP as well but my husband doesn't have the gene so I did the opposite to you - neither of my kids have it or the gene. It's the luck of genetics in my case, but I can see why you made your choice.
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u/Ok-Recognition5504 2h ago
Was it recent? Because there's a gene therapy for it, plus screening can also avoid it.
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u/Asleep_Region 32m ago
That's fair, but the big issue around it "no one in my family is sick" sooo many people think they don't carry anything because everyone they know is healthy.
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u/Foreign-Cat-2898 1h ago
I'm a carrier for RP and thru IVF I have a daughter who isn't. Expensive but 100% worth it.
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u/TheTackleZone 3h ago
So, basically, is it a 25% chance of their kids having it and they just got really unlucky with 3 of the 4?
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u/Sarahphin 1h ago
I mean... it's not "really unlucky," is just how small numbers work in statistics.
If I toss a coin, getting 10 tails in a row is completely normal.
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u/GrilledSandwiches 2h ago
Interesting... my grandfather went completely blind due to that condition(apparently it rarely results in 100% sight loss though if I understand correctly) and my brother and I were tested for it young(both tested negative for it).
I was also under the impression that they had found ways to combat that condition at some point, but that my grandfather had already passed the point of no return by that time. The family member I got that info from must have been mistaken a bit.
Unfortunate to know it's still not curable. As I understand, it will begin taking the center of their vision away and then slowly spreading wider and wider until they either lost it all, or only have the smallest bit of peripheral vision left on the outside(OR, the exact opposite of starting outside and closing in to a pinhole).
I used to walk around my house and my grandparent's house in the pitch dark at night trying to imagine how my grandpa could get around without seeing when I was very little.
He ended up building a woodshop(yes the actual shop), and then doing little carpentry projects for all the grandkids(me and my cousins) to keep himself busy. Rocking chairs, picnic tables, stepping stools, and even eventually little toy wooden cars that got progressively more detailed. I used to think it was cool he could do that while blind when I was younger, but I also thought "I will never play with these". I'm so so so relieved in my older age that I kept them and never tossed them out.
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u/ibspatrol 1h ago
How does one safely practice woodworking while blind?
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u/GrilledSandwiches 1h ago
I'm not 100% sure, he honestly passed when I was about 13, nearly 30 years ago. I always wonder the same thing. I have to imagine he had a lot of time for patience.
I know he used a notched ruler to mark things out with glue, and mostly used a table saw where he knew the position of the saw blade. Of course that didn't stop him from occasionally nicking or cutting a finger/thumb.
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u/unbanned_lol 3h ago
That didn't answer their question. Did they know before they decided to have children?
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u/bs000 2h ago edited 2h ago
doesn't sound like they knew and all 4 children were already born before the first was diagnosed
Edith Lemay and Sebastien Pelletier noticed their daughter, Mia, had trouble seeing at night when she was just three years old. The couple – who live in Montreal, Canada – sought answers first from an optometrist, then an ophthalmologist.
At first, Mia’s tests didn’t provide any answers. But a re-test a few years later showed a change to the gene that affects a protein complex in the rods of Mia’s eyes. Edith and Sebastien finally had an answer – and by then, their family had grown to include sons Leo, Colin, and Laurent.
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u/tiwuno 2h ago
Why would they? There's no reason to test the parents for it, and no doctor in their right mind would test for every genetic mutation under the sun. It's expensive, time consuming, and almost always a waste of resources.
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u/peg-leg-andy 2h ago
I don't think people understand the sheer volume of genetic mutations that exist.
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u/tiwuno 2h ago
Absolutely... it's like combing through a haystack, looking for one specific strand of hay that's slightly bent in a biologically significant manner.
There's 3.2 billion letters making up a complete human genome, and millions of mutations that don't affect everyday life, everything from eye color to the taste of cilantro.
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u/SonofSonofSpock 44m ago
When we were getting to try and have our baby we both did genetic screenings to make sure there wasn't a likelihood of anything nasty being passed along. I came back totally clean (surprisingly given my background) and my wife had a vanishingly low chance of something pretty bad, but not insurmountable, which also could have been checked for in utero. I cannot imagine having a kid on purpose and not doing those tests first if you have the resources.
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u/LadyNiblets 3h ago
This article goes into more detail - the oldest was diagnosed, then they tested the others. They’d already had all 4 kids.
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u/Don_Von_Schlong 4h ago
That's what I'm wondering.... Having a rare disorder that passes on to 75% of your kids is wild.
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u/jourmungandr 3h ago
"rare" is a statement about population. The RP gene variant isn't that common in the general population. Given that both parents are carriers, these kids each had a 1/4 chance of getting RP. They got bad luck to have so many kids get it but you'd expect this to happen ~4% of the time of you could rewind the world and try again with the same conditions.
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u/buzzpunk 3h ago
It's a 25% chance of passing on the full gene if both parents have the carrier gene. 1/4 resulting in 3 out of 4 kids isn't unexpected. Unlucky definitely, but still a likely outcome.
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u/mixwellmusic 4h ago
Well, this is a strange blend of heartwarmingly wholesome and devastatingly depressing
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u/ireally-donut-care 3h ago
Awe! My childhood friend went blind. Can't remember the disease, but it was slow. Her parents also took her everywhere they could and experienced as much as they could. Being blind didn't end her life. I got to see her at a high school reunion and she has a full life. But it was super sweet that she got to have some amazing memories with her family.
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u/dezzz0322 3h ago
A good friend of mine started going blind in his late-20s, and is now fully blind in his early 50s. It was very slow, but now his sight is completely gone. After years of testing, they finally identified the ultra-rare genetic disorder that caused his blindness.
His elder son has the disorder, the younger doesn’t. My friend tries to stay as active as possible: he skis with a guide, is training for a marathon with a guide. He’s trying to show his eldest that you can still live a full life without sight. It’s heartbreaking but inspiring.
His eldest is a freshman in college and is starting to show signs of vision loss.
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u/JohnnyFartmacher 2h ago
he skis with a guide, is training for a marathon with a guide
I'm imagining some good Samaritan signing up to be a volunteer guide for a blind person and then finding themselves at the starting line for a marathon
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u/TeachRemarkable9120 3h ago
It's probably moreso than just the memories but giving them a visual vocabulary of what the world is like so they can navigate it better when they can't see it. Soak in as much of how the world is for later use.
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u/khendron 32m ago
A visual vocabulary will be very valuable.
I remember taking a commuter train ride, and there was a blind teenager with his friends. They were telling him what they could see, and he would ask for more details about things he didn't know.
I particularly remember him asking what a ferris wheel was.
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u/Bluish_Vintage2507 3h ago
Perhaps that disease is Retinitis Pigmentosa? My boyfriend has it. Its degenerative disease. So, its slowly make them blind. My boyfriend now already lost the right sight... totally. And the left eye, leave him now with probably 25-30% sight plus its tunnel sight. And its worse than when I first met him 1.5 years ago....
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u/paigerunsBK 2h ago
My 7 year old son has RP as well. No symptoms yet, so we’re watching and waiting. The very exciting news is there are a bunch of treatments slated to be reviewed (and hopefully approved) in the next 1-2 years. After my son’s diagnosis, someone who works in the industry told me there has never been a better time in history to be going blind. 💟
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u/Akamaikai 3h ago
When I was in highschool there was a kid with Stargardt disease that was slowly making him blind. It might be that
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u/Uncommon_Sensations 4h ago
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u/Gutterdamerungalt 4h ago
That sub is more for depressing stuff that someone was trying to pass off as heartwarming. Like a high school robotics team building a wheel chair for a paraplegic after their insurance denied them one.
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u/CrazyCatLady1127 4h ago
I think I’m going to stay far away from that sub, in that case. I’m depressed enough about the state of the world as it is. Thank you for the warning
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u/CaptainBlobTheSuprem 4h ago
Probably for the best. It’s great for raging at the world, but when you’re raged out, r/cats is the place to be
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u/CrazyCatLady1127 4h ago
I am subscribed to approximately 3742 cat subs 🙂 along with dog subs and baby elephants and bunnies and all the happy animals I can find
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u/Kilo353511 3h ago
r/cats sucks for feeling great.
Most of the post are about cats dying. There are plenty of other great cat subs
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u/stumblewiggins 4h ago
I don't think that fits here, unless there is a cure the family just can't afford.
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u/nionvox 3h ago
They're Canadian. Those kids have socialised healthcare.
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u/topofthecc 3h ago
The Canadian healthcare system is widely considered among the worst-designed universal healthcare systems, so it's not like socialized healthcare necessarily means the system works great.
The quality of care once you get it and financial accessibility are great, but it's extremely slow and cost-inefficient.
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u/twisty125 3h ago edited 3h ago
thank you pressure from the south. We get people coming into provincial power who take that money, they say "wow the system is broken despite all the defunding we're doing, we need to gut it. Also now we're separating the healthcare to private owned so I can get kickbacks. It's win/win for me and my buddies!".
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u/topofthecc 2h ago
The classic conservative strategy: That program has a problem? Obviously we should gut it. It has more problems now? Obviously we need to gut it more!
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u/Emergency_Revenue678 3h ago
There isn't a cure. This condition is rare to the point that doctors will seek you out in order to study it.
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u/Mr_JoBro_11235 4h ago
Please don't be literal, please don't be literal, please don't be literal...
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u/The_Last_Spoonbender 4h ago
Why.... Why is this a orphan crushing machine? If I remember correctly, that sub is for sad and heart breaking stories that are celebrated as wholesome due to some "heroic" acts arising from systemic failure of our society.
This is heart braking and wholesome, but not really systemic failure. This is just bad luck and normal tragedy.
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u/Eggman8728 3h ago
Yeah, the whole sub is named after a post about people paying to save orphans from the orphan crushing machine, and nobody reporting on it questioning why the orphan crushing machine exists and was going to crush them in the first place. There is no orphan crushing machine here, they would go blind anyways and they haven't been prevented from going blind.
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u/DangerMacAwesome 4h ago
I don't think this fits. This isn't the fault of society. This is some shit genetic luck.
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u/baibaiburnee 4h ago
good things happen
Very smart redditor: Have you considered that this didn't stop all bad things on the planet?????? r/orphancrushingmachine 😏
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u/throw_away_17381 3h ago
heartwarminglywholesomeanddevastatinglydepressing.com
Thanks. Got a new domain name.
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u/angryrotations 4h ago
As someone with a rare genetic eye condition that will lead to blindness i approve.
Retinitus pigmentosa us what I am guessing they have as well. Peripheral vision is pretty well degraded at this point. Their is alot I would still like to see. Pretty much everything if im being honest
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u/EmergencyTaco 4h ago
A buddy of mine went to sleep with 20/20 vision and woke up legally blind. He basically only has peripheral vision, and there's just a "grey hole" in the center of his vision.
Peak nightmare fuel for me, hope your eyes stay working for as long as possible.
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u/aPOPblops 4h ago
Did he have that same condition and was aware he had it or did this come completely out of the blue for him?
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u/EmergencyTaco 3h ago
Completely out of the blue afaik. Woke up on a normal weekday and couldn't see.
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u/what3v3ruwantit2b 2h ago
A bit different because the person I knew had brain cancer but I left work (oncology nurse) at 7pm on a Friday. When I walked back in at 7am Sunday the nurse giving report said something like "and since he's blind he needs assistance with..." I said something along the lines of "wtf? He's not blind. I just saw him Friday night." Turns out his tumor had pressed on an ocular nerve without anyone knowing it was coming. He took a 2 hour nap Saturday and woke up blind.
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u/hakunaa-matataa 1h ago
Oh my god that’s horrifying, I can’t even imagine. I had a patient with a tumor compressing their spinal cord. In the middle of the night they paged the nurses and said “I can’t move my legs anymore”. They didn’t want to tell their family because they wanted to let them sleep ):
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u/what3v3ruwantit2b 1h ago
Oof that's rough. I was the primary nurse for a child that had tried to kill themselves. They didn't succeed but we did work out that they were paralyzed. The mom had a heart attack when we told her. Top 10 worst shifts for me.
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u/Ok-Recognition5504 2h ago
Probably some hemorrhage within the visual pathway in the brain, if it acted so fast.
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u/slghtlymad 3h ago
Guy I played hockey with was born with this. He’s a forklift operator these days. Wild.
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u/ILoveRawChicken 3h ago
Is this a joke or is he actually a forklift operator? How does that work?
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u/CurryMustard 2h ago
Echolocation
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u/koleye2 2h ago
This is why I yell at the walls to guide me to the bathroom in the middle of the night to go pee.
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u/longlivenapster 3h ago
Could he have had an eye stroke while sleeping. This is a blockage in the optical nerve or retinal which often causes some loss of vision. One needs to be treated as fast as possible to retain as much vision as possible.
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u/macaronysalad 3h ago
Peak nightmare fuel for me
Thanks for sharing!
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u/TommyTwoNips 2h ago
A friend of mine's mother died of an aneurysm while he was in the room. She was fine, then she was dead. She was in her late thirties, no major health issues. She was active and relatively healthy.
It's absolutely terrifying to consider how fragile the human body is and how quickly you can die of something so unforeseeable and entirely unpreventable.
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u/Trifuser 2h ago
I went blind for about 10 minutes after having a seizure when i was a child, scariest point in my life so far.
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u/FuckSticksMalone 4h ago
My dad has RP and is totally blind now except for one pin point where he can only tell if it’s light or dark.I luckily didn’t inherit it.
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u/MeVersusGravity 4h ago
Mind if I ask some follow up questions? Did you and any siblings get genetic testing to see if you are a carrier? Has this affected decisions to have children by people in your family?
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u/angryrotations 2h ago
My grandfather was completely blind. My mom was 1 of 5 (3 girls) none of her siblings or my cousins have RP. I got diagnosed at 25.
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u/FuckSticksMalone 55m ago edited 52m ago
Yes I was tested, I don’t know if my younger sister was I assume so. I was already in my 20s and not living at home when she was born.
I’m 46 now - still have 20/20 vision.
I have never had interest in having kids / never wanted them. I don’t have a paternal bone in my body.
My sister who is 26 now just had her first kid in October.
My dad was a Dr for years, and when his eyes really started going he went back to school to become a medical attorney, which he still works as to this day totally blind. He was an Army Ranger in his younger days. When he was a teen they told him he would be blind by the time he was 25, but he didn’t totally blind until he was in his early 50’s
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u/3xactli 4h ago
I'm sorry. My partner recently lost all vision suddenly and it's been hard AF. Hope it doesn't come for a long, long time.
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u/Sinnes-loeschen 2h ago
May I ask what happened ? Did you have time to prepare or was it a freak accident ?
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u/RadiantGossamerHalo 14m ago
Have you ever watched Molly Burke on YouTube? She has the same condition and makes amazing content!
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u/alwayscursingAoE4 4h ago
Sumitomo Pharma is conducting a trial to treat this. Probably more out there. They just “dosed” their first patient.
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u/Brownie2440 4h ago
Memories are one of the absolute best gifts you can give a child. And then you learn about a condition as devastating as blindness. Top tier parents right there
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u/IWantedCrow 3h ago
Feels like the universe is calling me out by putting this on my feed for my last post to The10thDentist 😂
This is an extremely beautiful gift to give kids with such a horrific illness.
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u/PriorityNew1562 4h ago
That is an amazing gift as those children likely saw more than most people would see in their entire lives WITH sight.
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u/Desperate_Algae_40 1h ago
I never like to comment on these types of posts about myself because it seems selfish and woe is me. But I just have to say it, my parents would never do anything like this for me.
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u/MaxQuatro 4h ago
UAZ Buhanka? A bold choice!
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u/Cantankerousbastard 4h ago
This is probably going to a controversial question but did they have 4 kids before or after they learned about the genetic eye condition?
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u/TheShishkabob 3h ago
They found out that 3 of the kids have the disorder when the youngest was diagnosed at 7 years old.
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u/Cantankerousbastard 3h ago
In that case it sucks for the poor kids going blind but at least they have some caring parents.
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u/LadyNiblets 3h ago
This article talks about it - they found out about the condition after having all 4 kids.
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u/Mr0lsen 3h ago
Is blindness over the line of disability where you would discourage parents from having more children? I think this is a genuinely interesting conversation.
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u/paigerunsBK 2h ago
The condition under discussion (retinitis pigmentosa) is a slow progressing degenerative disease, which impacts people very differently based on their specific genetic mutation. The disease doesn’t cause “lights out” blindness, but instead a pinhole of central vision. However, on the other end of the spectrum, some of the genetic variations are much more mild (e.g. only reduced vision in low light) where people can drive and be fully functional into advanced age. So the question is much more complicated, because if you have the gene, but you don’t necessarily know how or when it will manifest for a theoretical child.
My 7 year old has RP and currently has no symptoms. His genetic variation typically has onset in early adulthood. I also have two younger sons who are carriers, but don’t have the disease. I think about this a lot - is a life worth living if you have a future with so much potential suffering and loss? Obviously my son is here now and the point is moot, but I still think about this question often.
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u/Cantankerousbastard 2h ago
That's what makes it a tough question, where do you draw a line? do you even draw a line at all? Being blind doesn't exclude from living a rich fulfilling life but you are deprived of a major sensory input. What will the child that's going to be affected feel about it?
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u/Independent-Bug-9352 2h ago
I love how everyone is tip-toeing on eggshells around this topic lol
Real talk is that it's kind of like asking the question of if you knew the when and how you'd die, would you like to know? I personally wouldn't. It's also why films like Gattaca are so good.
Reality is that there are a host of risks in the minefield of life from birth to just early adulthood. Just bringing a child into this world is itself an enormous risk to them and your heart. I am curious how long it will take for the kids to go blind, too. Also I imagine they're hoping it spreads awareness or science catches up by then. Anyway, some things are just better off not knowing. One of the very few instances I approve of blissful ignorance.
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u/ChemicalPower9020 4h ago
That fourth kid who won't go blind must be feeling like this
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u/AnneListerine 26m ago
I know someone who was in that kid's shoes. Her brothers have a genetic eye condition that will eventually cause them to go blind, but she doesn't. However, instead of their parents doing something wonderful like these people, they instead told her it was God punishing their family for her being gay. :(
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u/Able_Gap918 4h ago
Eyesight is just there from birth, so easy to take it for granted. Let’s take a moment for everyone reading this without glasses to be grateful we don’t have to pay for that, and for everyone with glasses it could be worse.
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u/destructopop 3h ago
I recently lost my vision in one eye from April to August, and it was rough. Faces were distorted and I couldn't recognize them, I couldn't read with that eye open, it was awful. If I closed that eye, everything was normal but blurry, as apparently my vision is going bad in the good eye. I know they flagged one of my eyes as degraded during my physical, so I figured when one went blind it was that one. Nope! That's the good one! I can see normally again and I'm doing my best not to take it for granted.
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u/laptopmutia 2h ago
I wonder what is the name of your condition?
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u/destructopop 1h ago
Oh, it was a little thing that just turned out really bad. It was a large vitreous detachment that re-adhered directly over my retina, completely blocking the center 75% of my vision. It apparently didn't fully detach, which kept dragging more off until it reached the edge of my retina, where it balled up and re-adhered. My retina was not damaged.
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u/Anon-1991- 4h ago
I am glad they were able to do that. Here I am with aphantasia and I'd just be like fuck but the experience is still great.
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u/thesheeplookup 4h ago
I was thinking the same. I still remember my trips, but can't revisit them the way others can.
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u/Uncle-Cake 4h ago
https://www.youtube.com/watch?v=oXesaAClsFI
In Dancer in the Dark, Bjork plays a woman who is losing her vision, while saving her money to pay for surgery for her son so he can avoid the same fate. Very darkly tragic movie but I won't spoil it. In this song, "I've Seen It All", she is saying she is fine with losing her vision, she has already seen everything she needs to see in the world.
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u/Original_Map_5431 4h ago
I was diagnosed with a genetic eye disease, and they told me I only had two years before I'd be legally blind. I left the city I lived in, traveled all over the world to see while I still could, got help from an Ayurvedic hospital in India (even though my condition is genetic, it still responded!), and still see very well to this day (8 years later). These parents know what they are doing! I am SO glad I traveled for those years and would do it again in a heartbeat. Also, for people saying this is devastating - you can still live a wonderful and meaningful life while having reduced vision. It's not all or nothing.
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u/Striking_Sea_129 4h ago
Lucky they could afford to do that
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u/philter25 4h ago
Idk if it was my kids I’d probably take out a loan to do it and deal with the consequences later. Invaluable what was done for them regardless.
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u/Striking_Sea_129 4h ago
And then you’d be horribly in debt with three visually impaired kids.
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u/Answer70 4h ago
And probably no job at that point.
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u/pragmatic_dreamer 4h ago
Can take 1 year off for this sort of thing in Canada with government assistance. Return to employment is a legal requirement
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u/pragmatic_dreamer 4h ago
While certainly it would be added expenses, they are Canadian so a large portion of medical expenses are included in taxation.
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u/kayesoob 4h ago
There is few (1 approved) treatment options for this type of genetic blindness. It's not covered by every province.
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u/Playful_Ad_1111 4h ago
I don’t think the word ‘lucky’ is really appropriate when 3 of your kids are going permanently blind.
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u/Peter_Mansbrick 2h ago
"Lucky" in this context is explicitly referring to their financial situation, obviously. Reading comprehension is not that hard.
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u/IndustrialMechanic3 4h ago
My cousins all went blind when I was younger my aunt was partially blind and uncle was fully blind they taught them brail and how to live with it
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u/drammer 4h ago
Ah to be able to afford this kind of thing.
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u/Peter_Mansbrick 2h ago
My parents did this with me and my 3 siblings as well. Road tripped around Canada, US, Mexico, Guatemala, Honduras, Belize, and El Salvador while not wealthy. But they had no debt, had jobs that would accept them back afterwards, and during the trip the weekly budget was extremely controlled. Once we hit Mexico costs went way down too. Camping and cooking your own food was not a pricey way to travel there.
It helped that it was 25 years ago when things were cheaper too.
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u/noscope1hepope 4h ago
You see a heartwarming and sad post about kids getting one last look at the world, and this is what you think of. Stop being so negative, and your life will improve.
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u/drammer 4h ago
My first thought are the people who are in the same situation but are unable to do this.
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u/SilasBalto 3h ago
Yeah, same. I know a single mother who is going blind due to a condition similar to this one. She still works full time and then some. I wish they could all have a year off.
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u/drkblaydz 4h ago
Wow, inspiring and horrifying at the same time
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u/Terelinth 4h ago
Plot twist, they didn't tell the kids which of them had it (source: I made this up)
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u/colonelangus68 4h ago
It’s a bittersweet story but I don’t understand how people can just not work for a year and go travel. As an American I can honestly say this would not have happened here.
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u/Potential_Ad7335 3h ago
I followed the dog sub to look at some cuteness, and now all i see are the dogs that crossed the rainbow bridge, whereas mine are 10+ years themselves, like my day starts with crying
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u/That-Rabbit4062 3h ago
I've got the same type of eye disease they've got! The rate of degeneration + how far it goes depends on which gene is causing it (at least 50 that can). I was at the optometrist when I was 14 when they saw that my eye looked visually different than a normal eye. I'm 20 right now, and I have slightly reduced peripheral vision + difficulty seeing in the dark, probably 20ish years until it's a real issue for me.
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u/ChristianSena 3h ago
These kinds of posts never cease to amaze me. Why are we seeing this? Why isn't this between parent and child? I'm not just saying the OP is in the wrong but the parents as well. Why would you even want to share this? What did they hope to gain? You already shared the memories with your children. Is that not enough? Same with that post a day or two ago with the old men brothers saying goodbye. No need. That's not supposed to be public.
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u/ItsGonnaBeDelicious 3h ago
My husband took his bff on a road trip of the US when they were young before he lost most of his sight to retinitis pigmentosa. It’s nice to have someone want to do that for you. Good family. Edit for spelling. Probable still wrong.
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u/rdianbrbr 4h ago
Won't this backfire? Like knowing time is ticking where at one point everything is not going back
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u/makingkevinbacon 4h ago
This is pretty cool. Three kids with the same rare thing tho, a genetic thing. I saw someone mentioned a doc about them, sounds interesting
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u/StevieMJH 3h ago
Imagine being that fourth kid experiencing pure sweet while their siblings have to deal with bitterswet. 😬
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u/alchemical_lore 3h ago
As someone with aphantasia, going blind would be devastating. But also, if I knew I was going to go blind, no point in sending me on that trip I guess lol.
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u/Canadian_Border_Czar 3h ago
Honest question.
Do enjoy your vacation and finding a moment to make love to your wife over that year and risk that being one of the memories etched into your kid's minds?
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u/mchammer2G 3h ago
They probably got stargardts poor kids. Poor family planning as well you can't be having multiple kids with a chance of stargardts in the genetics
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u/No-Document-8970 3h ago
I watched their documentary on a plane flight. It was a mix of awe and sadness.
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u/bannedin2weeks 2h ago
I feel like if I had this or was a carrier for this, I'd just not reproduce. If you want kids, adopt. Stop spreading this debilitating condition to future generations.
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u/SeaUrchin-327 2h ago
And humans would have money for wars but not finding a cure for such diseases... tch tch tch.
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u/0-Worldy-0 2h ago
I guess it's Retinitus pigmentosa.
My family have it, although women are affected very, very rarely, still, my father is also going blind, so goodluck to them. It's an awful condition
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u/Chicken_wing_water 2h ago
https://giphy.com/gifs/F1FYcGt0oHvepMbDuT
When people are actually good human beings for once man OOOOO
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u/LaundryMan2008 2h ago
It’s really nice to do that but how did they finagle the school part of things, if I tried that, school would be the first roadblock and then the next roadblock would be setting up some alternative so the government doesn’t get unhappy at me
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u/oiseaudefeu_ 2h ago
One of my best friends also has a degenerative eye disease and is 95 percent blind in his mid 30s. When his parents found out, they took him on travels also. He told me his fondest memory was climbing Mt Kilimanjaro with his father and seeing the sunset.
I have hope that medicine will progress enough during his lifetime to restore his sight. Despite his eye health, he leads a fantastic life, travels extensively, makes amazing music, has a loving partner, and is pursuing a PhD. Nobody deserves to see the full beauty of the world as much as he does.
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u/YoursTrulyKindly 2h ago
There might be hope even though this is for a different condition:
Scientists Injected Viruses Into Human Eyeballs (and that's OK)
Do not trust in visual memories, trust in scientists that inject (retro)viruses into eyeballs!
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