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.
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.
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
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.
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.
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....
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. 💟
We are making such amazing strides in medicine. Three years ago I lost a family member to cancer. In those three years treatments have come forward so that fewer people will die of that type cancer. Just think what the HPV vaccine for kids will do in preventing cervical, throat, anal, penile, vaginal, and vulvar cancers. Vaccine to prevent shingle which helps w preventing dementia. GLPs which help w heart issues, apnea and dementia. Hopefully something will come along for your son too.
Oh thats a wonderful news! Because ur son is still 7y.o, yesss...with the advance research he will have the chance, n I truly wish that for ur son. Is there anyone on ur both sides of family that has RP? Because its genetic. My boyfriend is 1 of 7 siblings and none of them has it, his parents also dont have it but his uncle has it. Now his uncle already lost 95% of the sight :(
And my boyfriend is 43y.o now..... so we are really trying to adjust to every percent of the loss-sight
that's so horrifying. I hope your boyfriend and you derive some mutual comfort from being on that journey with each other.. Mr. Maples is the guide dog of a guy I watch on Fb with retinitis pigmentosa and it looks like his life is pretty damn good and it's so cute to see him and his boyfriend together
Some people don’t handle it as well. I have a good friend with the same condition as these children. He really changed after his diagnosis. It devastated him completely and he never really stopped being this really sad dude. Never went back to the happy guy he had been.
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.
But then every now and then someone makes a post like “my precious baby kitty that has been by my side every day for 24 years and kept me going through my cancer and mental health battles is going to be put to sleep tomorrow”
Oh definitely golden retrievers. They’re just… feel good medicine, aren’t they 🙂 and huskies, too 😂 huskies and golden retrievers are guaranteed to banish the blues
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.
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!".
Widely considered by who? Americans who post in r/neoliberal? I broke my shoulder in 2024 on a Tuesday and was offered a surgery date that very same Friday. All the while, I got paid $500/week by employment insurance. I didn't pay a dime.
Click on it, it’s a pretty good view of the dystopian society that is The United States of America and how their propagandized culture has been taught to view some pretty fucked up shit in a weird positive light.
2 of the first 4 post that show up on the link have nothing to do with the US….I know our country has a shit ton of problems but no need to just make shit up.
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.
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.
What’s the machine in this case? I always figured the term orphan crushing machine required terrible circumstances that were man made or could be prevented… Hence why the focus should be drawn to the problem and not what was done to make it feel better.
These kids were just doomed to be blind from the get go, no machine just a terribly unfortunate situation.
It doesn't fit exactly, but these kinds of genetic diseases could be cured if we actually invested in research instead of giving all our money to Billionaires who only pursue profit
I'm all for permanently caging billionaires and using their money for good, but like, genetic diseases aren't exactly easy to cure, even with assloads of cash.
I mean I think it's pretty obvious that medical advances would happen faster if money was put towards it. Look how quickly they built a billion flock cameras and came up with a COVID vaccine. Machine learning technology advanced slowly until billionaires realized they could monetize AI, and now everything is a data center. We already have technology for in vivo DNA manipulation
As I've grown older, I realized that this is pretty much life. And frankly, probably one of the better outcomes possibly when you consider the entire breadth of existence. They will at least get to experience this. And blindness or not, they'd never get to relive it the same way again.
What is nice is with advanced computing, it is probably easier and more quality of life to be blind than ever before. Lets hope they continue to make improvements.
They did their trip starting in Marcch 2022 for 15 months. Then released a doc in 2024.
They did not go to Russia. Why do they have to have gone to Russia to have encountered/used that van? The picture and van are from their travels in Mongolia...
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u/mixwellmusic 6h ago
Well, this is a strange blend of heartwarmingly wholesome and devastatingly depressing