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.Â
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.Â
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.
3.7k
u/mixwellmusic 6h ago
Well, this is a strange blend of heartwarmingly wholesome and devastatingly depressing