If you'd like to learn more about FOP, check out this story we did on people with the rare disease in the past: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-73QhHP6Ktos.html
Beautiful families. What an incredible example they set. They make me want to be a better person and a better man. Peace and love to everyone from Houston, TX. ♥️🙏🏼
@@LB_Firelord With genetic disorders like this, there's not really such thing for a cure to use on an already-developed person. Even gene-editing isn't very useful after birth.
@Pewpew there is no treatment or cure, &.surgery is absolutely out of the question,.as that only makes the disease start spreading in the body faster, because FOP is triggered by injury & trauma to the body,.anything that damages any of the soft tissue,.such as cutting, or even vaccinations.
@@clownery9837 toxicity. Just toxicity is the one problem and it happens mostly in games murder mystery and breaking point. Maybe he/she was referring to the kids playing, but what's wrong with that. It is just a normal roblox player
øranuto husband You clearly don't know the difference between a fact and opinion. There’s no proof that God doesn't exist and there isn't proof that he does exist.
@@jackthegod9988ohhh someone saw the word blessing and was immediately triggered would you prefer the word lucky instead? What’s go you so perturbed dummy
padz yeah well don’t it’s not like feeling bad will do anything. If you feel bad about it try to do something about it. Sorry that was mean and Nothing personal I just wanted to say something
As is the tongue....it could very easily reach a point where these poor people even lose their ability to *speak* and literally become little more than a prisoner trapped within their own body.
@@gamester512 unfortunatelety fop isn't the only disorder that makes you feel like a prisoner to your own body. My grandma's brother has ALS and can't even talk any more
No one has a perfect day especially these people who can only stay in one position for maybe the rest of their life but yeah I honestly do feel ashamed in myself
@@vcvcf1896 i had foot surgery last year. Instead of fixing the problem, it actually made it worse. Ive had trouble walking ever since. Ive spent a lot of time feeling sorry for myself since. I swear after watching this video i plan on making a conscience effort to get over it and be thankful for the mobility i do have!!! My problems seem silly compared to what these brave individuals face daily. Im envious of their grace.
@@chadmorgan6942 the people with these types of struggles try REALLY hard, and they have to be their own hero. They weren’t trying to come across as lazy, its just that people with such disabilities go to extreme lengths to stay independent
They probably don't want to feel babied so they grow up wanting more independence. Someday you'll find yourself becoming more independent. It comes with time :) I grew mostly independent due to home life at 10 and others at 16 so there's really no true age where you become independent.
Hope for a better future is probably all that they really even have left at this point....being optimistic is probably the only thing even keeping these people sane. :(
This disease has always scared me ever since I found out about it. I can't fathom how these folks have the strength to power through it, huge respect to them and I hope they find treatment!
@YaBoiSoggyFirewood probably didn't know back then. Internet wasnt around. Doctors didn't know as much as they know now. The internet is our greatest compendium
The woman with FOP using herself for the drug triels is a hero in my eyes, shes using her own body to help find a cure and my heart goes out to them all and hopefully a cure is found
God bless them all! I was born with spinabifida and cancer and I’ve been through a LOT, but I’m sooo lucky to be able to get around still, granted not the best, but without help. I had no idea FOP was a thing. The courage they have is incredible!
Kudos to those kids. There's no way in heck if I were a kid diagnosed with this and had to see what I'd turn out to be in 10 or so years. I'd have to take the other way out.
I see this story as one of gratitude. I’m so grateful to see so many people with FOP able to live a full life. It is different from mine and undoubtedly harder due to the way our world is set up. I see lots of love and support within their community. I became acquainted with FOP back in the early 1980’s. I am so very grateful for the medial advancements made since then.
1:50 i have a little sister JUST like that little girl in the video and that little girl seems so happy and so playful and reminds me of my sister and it makes me so sad knowing what is going to happen to her as she grows up literally broke my heart and brought me to tears
When I get tired of my legs being straight, I’ll want to bend my knees, or if my my shoulder is falling asleep I can shift it...I can’t possibly imagine being stuck in a pose. I take so much for granted.
"Imagine beingbthe gentleman with the fused jaw" its not just him, more thsn half of all people with FOP have fused jaws, and the others will soon, its just a matter of time. Also, imagine not being able to lift either of your hands up to your mouth, to be able to eat or drink, or use the restroom on your own. There's so much more that we can't do, that most everyone else takes for granted..
I don't need to imagine, every joint in my body is locked in place, including my jaw. FOP is the most crippling disease known to man. I'm also completely paralyzed & bedridden because of it.
Stoneman syndrome actually makes perfect sense, and isn't cruel. Samuel Jackson's character in Unbreakable and Glass had Osteogenesis Imperfecta. You don't have to look it up if you haven't seen either movie, as it's nickname is Brittle Bone Disease.
