@@jainanovelo4025 People who have it hardest are often those with the best sense of humour. When life is hard u need to laugh and smile to carry on. That is why I can not take seriously all these SJW's online complaining about the weirdest things. Nothing screams privilege more than throwing a wobbly over something trivial.
Honestly, there is so much we take for granted. Moving your limbs, bending your hips, opening your mouth. Simple things we can do that we don’t think is particularly important is a dream for others
FOP is actually quite famous as a rare disease (check out Mutter Museum's collection). Even if the doctor didn't know about it, the symptoms are very distinctive, so it's relatively easy to look up.
I honestly think the rarity of the case helps. When it’s something autoimmune sometimes it can mimic so many things so it takes a lot lot longer to diagnose. Cases like this are so distinct. I’m sure it’s in their books as a standout section as it’s so unique.
@@Purplecrocodiles That’s true. I was able to diagnose myself with this rare disease called Intercranial Hypertension because of how specific the symptoms were.
If you or anyone close to you are dealing with health issues, even if they are genetic, I would really encourage you to look into Andrew Cutlers work, it is so often missed as an underlying issue. You can start by reading the success stories and I would also recommend reading the article by Rebecca Rust Lee on the Weston Price site. Wish you all the best
@XxMerc050xX Beautiful doesn't need to be used to describe physical appeal. For me, the struggles this girl is facing and her journey to overcome those demerits are what's "beautiful". Her drive to not give up and despair is "beautiful".
dito koent I’m with him as I agree. It’s unhealthy to call people what they’re not. You mean INNER beauty because the girl is not physically attractive. And no it’s not about looks; it’s a mere response to an invalid comment. In short- inner beauty is way different than beautiful. Beauty is special. By calling every woman beautiful takes away from those who actually are.
It'll never happen. They already have found cures... they wouldn't tell the "population" because these diseases are needed to keen out population down.
@@jordanboard896 Not true, what would be the point in not giving a cure to someone for a disease that probably affects 1 in a million or two million, surely it would be something like heart disease and cancer that they would try hide but not for something as rare as this.
Joe Collett what does that have to do with anything? I’m just tired of people placing other people so high for normal things. Anyone in that condition would adapt like she has it what the human body does it adapts and it adapts very well.
jbohn comments like these rub me the wrong way. It’s like youre saying “wow, thank God i dont have THAT” these comments have no sympathy or empathy to those actually suffering
That's part of being human and the learning process, there's more to life than the things we worry or complain about, and there are many things we take for granted, what matters is that we realize, and make the difference ourselves, as someone who didn't know what they had until it was gone, even if temporary, opened my eyes, and I hope it doesn't take something like that for others to open their eyes too.. though this video not only open many eyes as well, it opens their hearts, and I hope it leaves a positive impact on others to embrace themselves, and others.
It breaks my heart to see people suffer with this. After I watch them, I feel guilty for complaining about things. They teach us so much in just a short episode and it helps me be more grateful for what I have and can do. Girl , you are amazing. Thank you for helping me and for sharing your story. You are beautiful and strong and can do hard things!
Agreed 100%. We should always go on with our lives no matter the difficulties because other people are suffering 100 times more than us right now. Think about the children in Africa for example. Think about the refugees. What they have to go through in order to survive. We should consider ourselves lucky for what we have and how comfortable or life is. We should appreciate even the smallest things in our life because life itself is a gift and we are very lucky to even be alive, let alone experience awesome things in our life.
Just because someone's suffering more doesn't mean you aren't. Someone with only 20$ isn't suddenly wealthy because someone else has 1$, We don't always have to be grateful for everything just because someone has it worse. If someone's parents just died hey don't have to suck it up and be grateful for life just because someone else has experienced more death.
A scraped knee may not be as bad as a broken arm, but can grow into a much bigger issue. Issues are issues, no matter how severe regardless. One person's struggle shouldn't invalidate another's inconvenience.
I think her skeleton is on display at museum along with John the elephant man, maybe that was a different lady..... Uhm... I'm hungry, I'm gonna to go get something to eat. Anyone want anything?
i am so excited to hear that theres a possibility of her to open her jaw again with the drug trial she is on. i hope she gets the best outcome for her treatment!
its a wonderful thing for anyone suffering from this condition to go from no hope to hope, just to be able to operate on them without fear of creating new bone would be an amazing leap forward for improving their quality of life i just hope the medicine when fully finished is easilly avaliable to all who need it
I’m a bedridden 16 year old that suffers from severe M.E and Pots, and I also have some sort of brain tumor. I was completely healthy until about 14 years old. I worked out every day, even when I unknowingly suffered from M.E. I didn’t realize how many things I took for granted. I’ve just been bedridden for a little more than a year now but it seems like a life ago, and I can honestly not remember any time in my life that I haven’t felt sick because that’s my normal now, so my past memories from school and stuff feel untrue. Seeing all these heartwarming comments from people made me cry honestly, and it’s great that some people aren’t taking everything for granted (like I did), when I’m at my worst flare ups and can’t move or speak then I can just lay there and appreciate breathing at least. My biggest dream is to be independent again, so I can experience life to the fullest and travel across the world like my dad did. I’m currently trying to teach myself Korean, because that’s one of the first places I would like to visit! I’m usually quite optimistic but I do get depressed at times. I think it’s beacause my days get so repetitive and my mind just want to run outside but my body won’t let me. I wish everyone got the privilege to live a healthy life, and I hope technology can somehow find a cure to all diseases one day since it’s developing so quickly. Anyway, thank you if you read this far haha hopefully it was worth the energy I put into it because now I have to sleep.. wishing you the best😄💗
Aurora You can do this! Never lose hope. If you can write I recommend you to try the roleplay world. In Roleplay you make a character in a social media and then u interact with other people describing what u character does. Like an interactive book. With writting u will be able to enjoy a lot of different adventures just with imagination. I hope it helps!
Aurora ur msg had me teary eyed. Reading this has made me realise I need to STOP complaining about the little stuff in my life and actually be grateful. I wish u only the best and hope too one day there will be a cure. I'm so sorry for wat you going through. 💕
Aurora i hope u get healthy like u deserve to be . I know how you feel i have back problems wich are scoliosis lordosis and kyphosis all of them i have . And as we know all the nerves are in are spinal cord i cant control my emotions i have anxiety i dnt feel so good like i used to . I exercise everyday but im tired of this i wanna be like before my heart hurts. Appreciate ur health. Wishing u all healthy life
@The amateur Artist Well, smart researchers, scientists, and a support structure don't come for free. Give them a deadline and force them to do their best and I would be 100 % sure that they would come up with something.
Carli went to school with me for many years. She’s a trooper, never lets her condition get in the way. I’m proud of her for being on this program and sharing her story. Hopefully we can find a cure for this horrible disease one day.
@@thomaslondonderry7341 I never like to say things are impossible! I think the closest possible solution would be genetic editing. That wouldn't help the living, but preventing it for future generations would be great.
They are so cute and amazingly supportive. Like when her dad she wasnt great at swimming, and her mom nudged him. They are just so on her team and ready to help her out whenever. That's amazing
When I see people who constantly have to battle everyday, it makes me feel so blessed and yet so upset for them in their position. It hurts me to see kids and people get bullied or bashed for simply being who they are. They can't help it, and it's quite beautiful to see these people still smile and find happiness through their pain. God bless her and her family❤🙏🏼
That's like every dad doing that cuz they don't know what to not say to the public and the moms trying to shut them up not so subtly lol. Aka my parents😂😂😂
I remember back in elementary when i made a slide show about this disease. Back then it was incurable but now im so glad to hear that scientist are coming of with treatments. Best of luck to you on your journey, count your blessing folks and always focus on the positive.
He was being realistic. If she wasn't the best swimmer and its true, then there should be no problems with mentioning it. It has nothing to do with putting someone down.
I don’t know her but I love her and I want to hug her tight but I feel like that would hurt her. Bless her heart, and I pray she gets everything she wants and needs in life
@@premierprendergast757 your right I've seen her commenting on People you gotta it right it trump it sure is trump is she Donald trumps wife or something she's dislikes persistent and she's defendent on everything ain't it right? She really Is I'd probably say she defendant on everything, anything REALLY she is she really is should be ashamed of herself saying stuff like this so ya whichever you want you don't have to answer me 😎😎😎😎😎😎😎
@Winter Backerley *big hugs* I hope you're okay xx sorry this effected you so badly you must be a very kind and empathetic person. Please look after yourself xx
@Winter Backerley It doesn't seem like she's depressed Sure it sucks and it's terrible but the last thing you want to do with something like this is be depressed about it, that's not making the best of what you have
Believe it or not. But it isn't. I know a woman in her 50s that has it. She s basically now at the point of fob only thing she can move is her hands. And small movement of her mouth. Everything else is locked in place
I love her personality and spirit “Not often do you need to look at the ground” lol I wish I could get to know her as a friend, she’s someone I’d love to be around
Sylvia Babajide I hate when someone has an issue and the only thing people SAY is I’m praying for you or they say we support you.. only in posts though. But what do we actually do? We don’t really pray for them we just do it in posts and that is the prayer. Smh sad
it warms my heart seeing a smile on her face while she has to deal with this terrible disease... this makes me feel so terrible for complaining about my life every day. she’s in my prayers.
Just moments ago I was cursing myself for not making it big career wise, feeling guilty of not making my parents proud and all such negative thoughts and feelings...somehow this came up in my recommendations and all the negativity just vanished looking at her!!! Not once she has said anything negative about her life...that why her!!!...writing this comment not for any likes or something...but to remind myself that ALL IS WELL...love u Carli
Annire Uwejeyan if there is a god why does this girl have such a life altering condition??? Why do children die of cancer God has nothing to do with genetics or the fact that your parents did it and created you.... sinning created you are you grateful for that 🙄🙄🙄🙄🙄🙄
GSol Sol the notion of god was just a scandal they made People believe in during the renaissance to take control over the less educated people... People used to have to PAY ACTUAL MONEY to be relieved of their sins... how fucked is that
@@OksanaBelle but they really didn't have to. They could have done it themselves. Plus, nobody was meant to be deformed, it came from Adam and eve and the fruit.
At 5:30, I instinctively started thinking “yeah just cut that bone out of the jaw!” without thinking about “oh yeah, if they cut into the tissue in her face it might just cause even more bone to grow right there” 😔
I have myositis ossificaans. In my case bone grows within the muscle (usually if I really injure it) it’s incredibly painful for a couple weeks until it’s fully formed and then it is left to naturally dissolve back into the bloodstream (6-12 months) you’re right docs won’t cut it out because it will just trigger more trauma then bone growth. Unfortunately, for this poor girl, it’s her connective tissue so it’s fusing moving parts of her body. Devastating 😞
a little *laugh* a little *promise* a little *hope* words written on the wall in their home , they are a wonderful family and Carli is an amazing, brave woman ❤️ and she is thankful for everything in her life she is an inspiration I wish her family all the best
Amazing that she had such a good doctor to spot the condition. I can’t believe the photos of her back. Thank goodness that her parents and health professionals are supportive.
This is amazing I love how she’s treated like a normal human, I’ve always despised people who treated someone different just because they had something wrong with them
These types of videos should help people remember how lucky they are to have good health. Life is not fair, short, and extremely special. Live it like your a hero in your own movie and never look back!
I know all people say "wow she's so strong" but DAMN she is strong. I wouldn't even get out off bed in the morning and this young woman just lives her life the best she can
often its not what you do , more what everyone else does arround you. Alot of Help from Family , Friends , Boyfriend. Which most depressed persons dont have. Exept theyre healthy
I hope she gets cured and lives a healthy life ahead !!! Hope is what keeps us going 👍Hats off to her parents who have been with her through all this !!
Honestly. I feel so bad. These are some things so many people take for granted....If only more people knew how lucky they were. We can hear and see fine, move and think for ourselves. I feel blessed for being able to do these things.
That whole family is so cute, im glad and find it amazing that she can still have a normal life and doesn't dwell on it. I hope they find the cure soon, sending prayers
Danielle despite the fact that i don’t have any disabilities or anything, it sucks when i come here to learn and someone’s like “count ur blessings be greatful” and i’m like “k thanks,,,don’t need to tell me tho” and the first reply to me is correct, we all should when we can, but these people aren’t your reasons why.
@@kyer.8225 Yea no you're right though. I have a disability myself and I absolute hate the pity and the fake positive attitude of people like "your boyfriend is amazing that he wants you despite it" that just translates to me that disabled aren't supposed to find love and if they do it's a miracle.. "if I'd be in your place I don't know if I'd be this happy" so technically my life sucks? Good. I know, don't have to tell me. So thank you for telling people that they should quit, just compliment them on something personal like their personality or looks and tell them you wish them the best, it's 10x better...
I wish we had cures for everything. Nobody deserves to live like this. It's just so heart breaking. She seems in pretty good spirits though. I wish her the best 💜
Omg her family, dogs, and boyfriend are so sweet! So supportive aaaaa I wanna cry. Carly you're literally just the most miraculous girlie ever!!! So lucky to be surrounded by these amazing people, too.😘
Clementine Ahnberg they didn’t have any bad intentions? just because someone partakes in religion and wishes the best for someone doesn’t mean they don’t deserve to live ¯\_(ツ)_/¯ but ig that’s just my opinion
@@patience_brody you may not realize how much pain you have inside you, but how you treat others is always a reflection of how you are on the inside. may you come to know Messiah and be free in your soul. Some of the hardest people, gangsters, murderers, drug dealers, hardcore addicts, etc., people whom I know personally and the environment I also personally come from, meet Yahshua and come to know the greatest freedom theyve ever known. nothing wrong with connecting with the One who created you, and who knows you better than yourself.
This is heart breaking. Had no idea this even existed. So much respect to her and her family. 100% commitment and it's beautiful even though it's such a sad story.
@@muthatucka7436 The fact that he is prepared to support her and her disease. Most men wouldn't want to go through the daily struggles with her, it isn't about her looks. She is stunning in my opinion, it's about the disease. Right now her disease is just getting worse, hopefully, the doctors will provide them with some cure. He knows this, yet he made the decision the move in with her, take the responsibility of her mother's hands and into his own. He is a great man, don't try and take that away from him, I'm sure Carli and her family will agree.
My friend Joe has the same condition Its really sad to see him in pain, but its wonderful to see that he still has joy and fun living We're getting closer to a cure In the meen time pray it helps i myself am a cancer surviver (thyroid cancer) Praying numbs the pain and calms the mind Hope you get better❤🖤❤🖤🖤🖤❤🖤❤❤❤❤❤❤ Im not lying he does have the condition and i am a cancer surviver i had it in secOnd through fourth grade I dont understand why i would lie about having cancer and some who has a veryRARE AND PAINFUL DISEASSE
We are so blessed that we don't even notice our numerous blessings & instead focus on few minor things that we don't have. May God guide us to the right path !!!
I suppose nobody is going to say anything about how the doctor insta knew that she suffered from this extremly rare condition. What a legend
Well why else did he spend several years and a fortune in medical school if not to know this??
@@zazabrown732 Enough doctors don't recognize conditions that are half as rare as this one.
I was getting tested for cancer and now my doctor after just looking at me and my hormones found out I had a brain tumor.
do you mean dr mike? where did you know it from btw?
Most doctors will just guess and give you some good ol prescribed Amphetamines
“Not very often that you talk to the ground.” Hahah she’s got an amazing sense of humour. Bless her ❤️
Agreed.
I read total sadness. Sometimes people that make us laugh are the saddest.
@@jainanovelo4025 People who have it hardest are often those with the best sense of humour. When life is hard u need to laugh and smile to carry on. That is why I can not take seriously all these SJW's online complaining about the weirdest things. Nothing screams privilege more than throwing a wobbly over something trivial.
fikile sihlangu ntwana Yami
This will be out of context but you're really pretty 🙂
Honestly, there is so much we take for granted. Moving your limbs, bending your hips, opening your mouth. Simple things we can do that we don’t think is particularly important is a dream for others
CAM so true!
True that
Yes.
I love you💛
so true
The doctor that diagnosed her is incredible. Only 800 cases and he knew what it was.
FOP is actually quite famous as a rare disease (check out Mutter Museum's collection). Even if the doctor didn't know about it, the symptoms are very distinctive, so it's relatively easy to look up.
@@eggsybenedict7014 you are right
that’s what I was thinking!
I honestly think the rarity of the case helps. When it’s something autoimmune sometimes it can mimic so many things so it takes a lot lot longer to diagnose. Cases like this are so distinct. I’m sure it’s in their books as a standout section as it’s so unique.
@@Purplecrocodiles That’s true. I was able to diagnose myself with this rare disease called Intercranial Hypertension because of how specific the symptoms were.
This girl is so strong and beautiful. Her illness has not made her a victim, but a fighter. ❤
If you or anyone close to you are dealing with health issues, even if they are genetic, I would really encourage you to look into Andrew Cutlers work, it is so often missed as an underlying issue. You can start by reading the success stories and I would also recommend reading the article by Rebecca Rust Lee on the Weston Price site. Wish you all the best
Wow...i ❤this comment
@XxMerc050xX Her looks aren't what matter right now -_-
@XxMerc050xX Beautiful doesn't need to be used to describe physical appeal. For me, the struggles this girl is facing and her journey to overcome those demerits are what's "beautiful". Her drive to not give up and despair is "beautiful".
dito koent I’m with him as I agree. It’s unhealthy to call people what they’re not. You mean INNER beauty because the girl is not physically attractive. And no it’s not about looks; it’s a mere response to an invalid comment.
In short- inner beauty is way different than beautiful. Beauty is special. By calling every woman beautiful takes away from those who actually are.
Forget about insecurities.. She taught us to be grateful with ourselves😭😭❤❤
You can still feel free to have insecurities, worries, and complaints.
thats dtupid , you literally say "you have no right to be sad " ....
@@johnnyjoestar7595 oh my ...don't misinterprete😭😭 I say that because I have a lot of insecurities for my own appearance...oh...sorry..🙇
@@baileyspeltbeefy1768 yeah, I agree...But what I mean is for me..I have a lot of insecurities for my own appearance🙇❤
I’m hoping that one day we can get a lot of these diseases cured so good people like this can’t be affected
It'll never happen. They already have found cures... they wouldn't tell the "population" because these diseases are needed to keen out population down.
@@jordanboard896 Not true, what would be the point in not giving a cure to someone for a disease that probably affects 1 in a million or two million, surely it would be something like heart disease and cancer that they would try hide but not for something as rare as this.
@@jordanboard896 Lets put on our tin hats while we are at it
@@jordanboard896 its like how they use vaccines to kill of the sheeps
@@virtualfroggy don't tell me your anti vax lol actually your probably joking
she has good really good balance, if i was talking to people with one lag up i would probably fall on them. I rly hope they find a cure. :)
Maybe they will. But they can't just remove the extra bone because it'll grow back and even worse like a tumor.
No you wouldn’t fall, just like anyone else who gets this you would adapt she’s not special neither are you
Tim Markus jeez Tim, who hurt you?
Joe Collett what does that have to do with anything? I’m just tired of people placing other people so high for normal things. Anyone in that condition would adapt like she has it what the human body does it adapts and it adapts very well.
I mean, most people weren’t born with restrictive movements and not be adapted to standing on one leg so
Looks so painful. Ugh my heart breaks for her. I couldnt imagine seeing your kid suffer
Ravenclaw Prefect not very uplifting, are we
What a rude thing to say.
Unknown Persons How is that rude?
Wow. Sympathy is now rude, aye?
Lex I’m sure y’all are the same people that when a person does it was all gods plan.
Count your blessings folks.....
jbohn comments like these rub me the wrong way. It’s like youre saying “wow, thank God i dont have THAT” these comments have no sympathy or empathy to those actually suffering
@@snow.flower I'm sorry that you are misinterpreting my post. Have a blessed day.
jbohn look at her house mate
@@finalhourhd8822 Yes it's nice but I would rather have my health then a fancy house any day. I'm sure she feels the same way.
@@snow.flower Thank you for that comment because those replies to it show how fucked up religion is.
Who else just realized how ungrateful they are
AngeKerr nope
no one the world is ignorant
Surfacekilla 1 but are u sure about that😐
Not ungrateful, but I need to rethink some things I’ve said and done.
Bro same!!
The balance she has, I can't even walk straight. That girl is a warrior.
She truly is!
how can you not walk straight?
@@zeorph have you ever heard of laxiness and knee problems ?
@@dallunatic well you should probably state that then
cap
just imagine how painful that must be.. what a brave girl
Oh it is the hreat has a chance of turning into bone if damaged
Oh my goodness. I couldn't imagine it.
Your bravery inspires all
oh my god. i just realized how ungrateful i am.
That's part of being human and the learning process, there's more to life than the things we worry or complain about, and there are many things we take for granted, what matters is that we realize, and make the difference ourselves, as someone who didn't know what they had until it was gone, even if temporary, opened my eyes, and I hope it doesn't take something like that for others to open their eyes too.. though this video not only open many eyes as well, it opens their hearts, and I hope it leaves a positive impact on others to embrace themselves, and others.
Can’t relate
Nonsense. That's just a word only humans made. We're still animals. People just aren't as lucky.
Farzaan Ali RUclips video about someone with a condition that could very much teach you how ungrateful people are.
Me to
It breaks my heart to see people suffer with this. After I watch them, I feel guilty for complaining about things. They teach us so much in just a short episode and it helps me be more grateful for what I have and can do. Girl , you are amazing. Thank you for helping me and for sharing your story. You are beautiful and strong and can do hard things!
Agreed 100%. We should always go on with our lives no matter the difficulties because other people are suffering 100 times more than us right now. Think about the children in Africa for example. Think about the refugees. What they have to go through in order to survive. We should consider ourselves lucky for what we have and how comfortable or life is. We should appreciate even the smallest things in our life because life itself is a gift and we are very lucky to even be alive, let alone experience awesome things in our life.
Just because someone's suffering more doesn't mean you aren't. Someone with only 20$ isn't suddenly wealthy because someone else has 1$, We don't always have to be grateful for everything just because someone has it worse. If someone's parents just died hey don't have to suck it up and be grateful for life just because someone else has experienced more death.
A scraped knee may not be as bad as a broken arm, but can grow into a much bigger issue. Issues are issues, no matter how severe regardless. One person's struggle shouldn't invalidate another's inconvenience.
She is so young, it’s heart breaking
“She was on the swim team, she wasn’t very good” *wife elbows husband* that’s the most dad thing ever
oh yes
Haven Lewis I absolutely love that moment I thought it was so truthful and so typical it made me laugh what a beautiful loving family she has
Lol
Best comment
It's a dad thing.
I love that she says she stands like a flamingo. She’s a sweetheart. Bless.
when the video starts you can also see she has flamingo decorations in her bedroom lol I love it.
After watching this I just want to slap my self for complaining everyday
Don't
I feel like slapping myself too.
yes if just been on the phone to my son complaining because I have head cold
Same!
I tore my acl and miniscus and got surgery and I can’t take not walking without crutches. I feel like shit for complaining
Anyone else watching this in 2021 and wondering how Carli is doing? She’s amazing and such an inspiration!
I think her skeleton is on display at museum along with John the elephant man, maybe that was a different lady..... Uhm... I'm hungry, I'm gonna to go get something to eat. Anyone want anything?
@@N1ghtH4wk86 That was Harry Eastlack, I think.
When the dad said she was no good at swimming and mum nudged him.. 🤣
Honestly I feel for her. But she’s living her best life! Amazing
I love people who can find humour in anything..better to laugh than cry
@@nickb4162 a laugh is the first punch you can land on the disease's face
Mama twins
LoL something str8 out an movie
Time ?
i am so excited to hear that theres a possibility of her to open her jaw again with the drug trial she is on. i hope she gets the best outcome for her treatment!
its a wonderful thing for anyone suffering from this condition to go from no hope to hope, just to be able to operate on them without fear of creating new bone would be an amazing leap forward for improving their quality of life i just hope the medicine when fully finished is easilly avaliable to all who need it
I’m a bedridden 16 year old that suffers from severe M.E and Pots, and I also have some sort of brain tumor. I was completely healthy until about 14 years old. I worked out every day, even when I unknowingly suffered from M.E. I didn’t realize how many things I took for granted. I’ve just been bedridden for a little more than a year now but it seems like a life ago, and I can honestly not remember any time in my life that I haven’t felt sick because that’s my normal now, so my past memories from school and stuff feel untrue. Seeing all these heartwarming comments from people made me cry honestly, and it’s great that some people aren’t taking everything for granted (like I did), when I’m at my worst flare ups and can’t move or speak then I can just lay there and appreciate breathing at least. My biggest dream is to be independent again, so I can experience life to the fullest and travel across the world like my dad did. I’m currently trying to teach myself Korean, because that’s one of the first places I would like to visit! I’m usually quite optimistic but I do get depressed at times. I think it’s beacause my days get so repetitive and my mind just want to run outside but my body won’t let me. I wish everyone got the privilege to live a healthy life, and I hope technology can somehow find a cure to all diseases one day since it’s developing so quickly. Anyway, thank you if you read this far haha hopefully it was worth the energy I put into it because now I have to sleep.. wishing you the best😄💗
Aurora i wish you the best. good luck ♡
Aurora You can do this! Never lose hope. If you can write I recommend you to try the roleplay world. In Roleplay you make a character in a social media and then u interact with other people describing what u character does. Like an interactive book. With writting u will be able to enjoy a lot of different adventures just with imagination. I hope it helps!
Aurora ur msg had me teary eyed. Reading this has made me realise I need to STOP complaining about the little stuff in my life and actually be grateful. I wish u only the best and hope too one day there will be a cure. I'm so sorry for wat you going through. 💕
Aurora i hope u get healthy like u deserve to be . I know how you feel i have back problems wich are scoliosis lordosis and kyphosis all of them i have . And as we know all the nerves are in are spinal cord i cant control my emotions i have anxiety i dnt feel so good like i used to . I exercise everyday but im tired of this i wanna be like before my heart hurts. Appreciate ur health. Wishing u all healthy life
Thank you so much for sharing your story. Hope you can visit Korea soon! Wishing you all the best in the world, beautiful soul ❤️❤️❤️
If I was a billionaire I'll give this woman a lot of resources to find a cure.
J79 ❤❤❤
@The amateur Artist Well, smart researchers, scientists, and a support structure don't come for free. Give them a deadline and force them to do their best and I would be 100 % sure that they would come up with something.
The government can cure most diseases now like cancer but it’s a business so they never will
@The amateur Artist That's not the right question. Are we working as hard as we can to find relief/cure for FOP.
J79 don't lie to yourself if you were a billionaire you would never do such a thing. A person changes when they get access to more power and money
Carli went to school with me for many years. She’s a trooper, never lets her condition get in the way. I’m proud of her for being on this program and sharing her story. Hopefully we can find a cure for this horrible disease one day.
Does she still go to your school?
Missy Yolo “went”
Missy Yolo she is 23 😂
It is impossible to find a cure.
@@thomaslondonderry7341 I never like to say things are impossible! I think the closest possible solution would be genetic editing. That wouldn't help the living, but preventing it for future generations would be great.
Her parents are such calm souls, this is beautiful, made me tear up 😢😍
They are so cute and amazingly supportive. Like when her dad she wasnt great at swimming, and her mom nudged him. They are just so on her team and ready to help her out whenever. That's amazing
What a beautiful strong young woman. I love that her condition doesn't hold her back from living her own life.
Jaklyn It kinda does. She can't play sports or even ride a car because of it. Though I also admire her braveriness and that she keeps going.
Omg, I thought *condition* said *condom.*
I'm so ashamed of myself.
RøckinRïley omg oml
Omg I thought you were pewds
Sushi Face007 same lmao
When I see people who constantly have to battle everyday, it makes me feel so blessed and yet so upset for them in their position.
It hurts me to see kids and people get bullied or bashed for simply being who they are. They can't help it, and it's quite beautiful to see these people still smile and find happiness through their pain.
God bless her and her family❤🙏🏼
she's adorable in her cheerleading outfit! :D
Sally Brack she's adorable anyway
“she was on the swim team, she wasn’t good” then that nudge lmfaooo parents.
That was really cute. Lol
That's like every dad doing that cuz they don't know what to not say to the public and the moms trying to shut them up not so subtly lol. Aka my parents😂😂😂
I can attest to this ! My hubs does this all the time 🤣
LMAOOO
Didn't have to scroll far to see what I was looking for lol.
She's a very brave girl.I'm glad scientists are working on a solution.
Yep interesting topic
Rima Kanaan Scientists are.... & will soon find a best solution !
Look at all these comments making it all about themselves.
She is amazing, a real hero for surviving! Go Carli!
Yes! THANK YOU.
“I WoULd hElP hEr” “iM gRAtEfUl”
@@riverogue13 what?
Shy Cat I’m mocking the people making it abt themselves
This is them sympathizing. People express themselves differently. Not everyone would fit your criteria
Forgetting her condition. She is really cute. I mean not out of pity or something. And some great sense of humor. Lovely woman.
i need nothin If you say that it’s not out of “pity or something” then it’s clearly is out of pity or something.
She is isn’t she
@@hellothere8812 What? No... Also, you can tell she is so lovely... sincere, strong, funny. I'd love to meet her
Podrick King of the Andals that’s not how it works...
Omg that’s the worst compliment ever
I remember back in elementary when i made a slide show about this disease. Back then it was incurable but now im so glad to hear that scientist are coming of with treatments. Best of luck to you on your journey, count your blessing folks and always focus on the positive.
I broke my wrist and I thought I was unlucky
The 23 year old is a fighter
I broke my arm on a zip-line and crossing the street on my way home i was hit by a Ford f-150 and it was black then i was fine
Army 💜 but you are right
@@the2ndducknotthefirstone.959 wow
I Love BTS, I love bts too ;)
Ok but seriously, I feel so ungrateful too
Hope she gets trough this and be happy all her life
Yessss
lmao when he went ‘she wasn’t very good at it’ and the mum nudged him with her elbow was so funny
She has a great sense of humor. Stay strong girl.
It's not great it's decent
Stay strong as a stone
*4:35** That Nudge from Moms when Dads put you down is treasure* 🥰
Dad wants her to win, but mom knows it's more about her being normal and participating.
Celina Chimera my parents are the same way😚makes me happy how much her parents care for her and love her
Not to mention the look she gives him at 4:42.
He was being realistic. If she wasn't the best swimmer and its true, then there should be no problems with mentioning it. It has nothing to do with putting someone down.
Nathanael Pierre yep
I don’t know her but I love her and I want to hug her tight but I feel like that would hurt her. Bless her heart, and I pray she gets everything she wants and needs in life
She's a ray of sunshine in this troubled world.
She really is. 😊
What a shining light.
I bet she makes everyone around her so proud to know her.
What a blessing she is as a person.
A shining light really? 🤔
"Can be triggered by anything like a fall or even something as little as a paper cut"
*Mum slaps a heavy highfive*
patchyfish1 right?! I was like “bruh her hands could turn to bone, chill”
She can’t spend her life scared of people touching her
I felt it through the screen.
why am i still here ? I mean I guess you’re weaker than her then
@@carolinemercer9779 feminist
"Not often do you need to talk to the ground." Awww... Love this girl ❤❤
Right? That was such a sweet little quip, I love her strength and sense of humor
"Maybe your turning into a stone but your heart still will be a gold"
eventually her heart will turn to stone
@@N1ghtH4wk86 make that oil
@@N1ghtH4wk86 weirdo
How the hell can people dislike this post. Just don't watch it. It's full of hope, determination, positivity.
Its very likely its indignation at her having such an awful disease while someone who in their eyes is undeserving of life has a nice, healthy life.
Trump is disliking this and im not trying to be funny because this is just sad
Well not all people have positive thoughts less in this selfish planet
@@premierprendergast757 your right I've seen her commenting on People you gotta it right it trump it sure is trump is she Donald trumps wife or something she's dislikes persistent and she's defendent on everything ain't it right? She really Is I'd probably say she defendant on everything, anything REALLY she is she really is should be ashamed of herself saying stuff like this so ya whichever you want you don't have to answer me 😎😎😎😎😎😎😎
@@premierprendergast757 idiot
It really hit when it said that when she was 7 her jaws locked.
god.. must of been so scary
@Winter Backerley *big hugs* I hope you're okay xx sorry this effected you so badly you must be a very kind and empathetic person. Please look after yourself xx
@Winter Backerley It doesn't seem like she's depressed
Sure it sucks and it's terrible but the last thing you want to do with something like this is be depressed about it, that's not making the best of what you have
She lying cuz she is still eating tons of unhealthy food 😂
Winter Backerley ok now ur doing too much. She’s ok, u don’t need to feel suicidal.
Poor girl, only 23 and knowing it'll be getting worse. 😢
She so sweet and her boyfriend seems lovely, bet they have a wonderful life together :)
I just watched one where a teens bones are vanishing, how crazy is dna
Bless all of them
Veronika Johns
Same 😭
I just came from that video as well! So sad
@Veronika Johns i pray that somehow your idea might be one of the great idea and useful to all the people who need this :)
Laura Leigh Petteway what’s the title of the video?
Alexis AFC the teenager with vanishing bones | living differently
Lord am sorry for complaining! I'm greatfull.
Sheddrack James grateful for what u were always meant to be here
You can still complain about stuff
After watching these extraordinarily brave people, I feel ashamed for complaining about insignificant things in my life... God bless you all
ok boomer
Amen
When I saw her together with her boyfriend, my heart stopped from joy 😍😍😍😍 may you live a long happy life girl
This has to be so painful. She's BEAUTIFUL and has a great attitude.
Believe it or not. But it isn't. I know a woman in her 50s that has it. She s basically now at the point of fob only thing she can move is her hands. And small movement of her mouth.
Everything else is locked in place
Dad: she was on the swim team, she wasn’t very good.
Mom: **elbows Dad**
nvm
I’m a cat
DoggoDoesThings J haha you know she might have just sucked naturally and not because of this
I read this as soon as he said it
@@janeadelaidelennox7193 no u
4:31
I love her personality and spirit
“Not often do you need to look at the ground” lol
I wish I could get to know her as a friend, she’s someone I’d love to be around
yesss She made me laugh there lmao
so sweet and humble personality
Ohh really you love her???
@@mubeenali8073 stfu mubeen
Brave young woman we support you with well wishes.I learned from you Carli no more complaing! You are Specially here to teach others!
Sylvia Babajide I hate when someone has an issue and the only thing people SAY is I’m praying for you or they say we support you.. only in posts though. But what do we actually do? We don’t really pray for them we just do it in posts and that is the prayer. Smh sad
@@TerrellAmari Nam Myoho Renge Kyo chanting for World Peace twice daily .Peace Happiness Wealth and Safety of All Living Beings!
You're allowed to complain. Just because someone else is struggling "worse" doesn't mean you're not struggling.
Terrell A'mari TrUE actually
Her balance is ridiculous, I could never. Glad she’s getting at least some what of a life she wants to live.
it warms my heart seeing a smile on her face while she has to deal with this terrible disease... this makes me feel so terrible for complaining about my life every day. she’s in my prayers.
Just moments ago I was cursing myself for not making it big career wise, feeling guilty of not making my parents proud and all such negative thoughts and feelings...somehow this came up in my recommendations and all the negativity just vanished looking at her!!! Not once she has said anything negative about her life...that why her!!!...writing this comment not for any likes or something...but to remind myself that ALL IS WELL...love u Carli
Same as you.
However sad her story is we s I have to be our best
Same thoughts
@Frederick Röders Thank you for this. I also needed it.
Feeling good and content after seeing another person's misfortune is normal. Don't feel bad. Have a nice day :)
Here I am complaining about *walking* across the parking lot.
Karreil2525 I complain about walking home from work which is only 15 mins. Time to stop complaining....
Im complaining about how heavy im getting and jogging isnt helping.
I complain about everything...lol lol ;)))
i mean.. everyone has their own problem..
@@huckleberry7481 agreed
Use me as an “I’m Grateful to God for my life” button
Annire Uwejeyan if there is a god why does this girl have such a life altering condition??? Why do children die of cancer
God has nothing to do with genetics or the fact that your parents did it and created you.... sinning created you are you grateful for that 🙄🙄🙄🙄🙄🙄
@@OksanaBelle good doesn't cause bad things on people. And if people pass away it is because it's their time
GSol Sol the notion of god was just a scandal they made People believe in during the renaissance to take control over the less educated people...
People used to have to PAY ACTUAL MONEY to be relieved of their sins... how fucked is that
@@OksanaBelle but they really didn't have to. They could have done it themselves. Plus, nobody was meant to be deformed, it came from Adam and eve and the fruit.
FizzDrip:3 you seriously believe in Adam and Eve??? How is that story even remotely possible ????? Have you ever heard of EVOLUTION
She has such a bright face and a charming smile!! Hope she enjoys her every moment coz she really deserves it.
Her boyfriend must be such a good guy. He knows that he's gotta take care of her for the rest of her life and still wants to commit👏👏
So true. A true legend. ❤ its good to see there is still true gentlemans exist. I wish i can find one,one day...
I wouldn't be sure of that
@@nurysieve2185 you wanna find one just play a very sexist song(that is very sarcastic) and if someone sing along he could be the one
Key Crafter i would 100 percent sing along.
@@nurysieve2185 BTW the song must be about treating women as a sex toy trust me
She is so positive, love her. She has awesome parents too, God bless u baby girl!
Nickeisha Barnes when the cameras on her
I'm 23 myself suffering from social anxiety. You give me a reason to be stronger and I hope one day there will be a cure for you. Stay strong
Hold To u r Strength
Smoke some of that good good
*Suffering* man dont laugh i got HIV from when i went bang bang with a girl i have 2weeks to live*
S. G 2 weeks, really??
@@rxmclan4288 ?
At 5:30, I instinctively started thinking “yeah just cut that bone out of the jaw!” without thinking about “oh yeah, if they cut into the tissue in her face it might just cause even more bone to grow right there” 😔
:(
I wonder if they could find a way to dissolve the bone
@@angelenergia2163 you would just dissolve the things holding her up. The condition transforms her ligimants, tendons, and other things into bone
Same😞 That disease is so horrible
I have myositis ossificaans. In my case bone grows within the muscle (usually if I really injure it) it’s incredibly painful for a couple weeks until it’s fully formed and then it is left to naturally dissolve back into the bloodstream (6-12 months) you’re right docs won’t cut it out because it will just trigger more trauma then bone growth. Unfortunately, for this poor girl, it’s her connective tissue so it’s fusing moving parts of her body. Devastating 😞
She has such a Beatiful soul.
`Grateful for what I have'
She makes me appreciate life a whole lot more..
Kaloumana
a little *laugh*
a little *promise*
a little *hope*
words written on the wall in their home , they are a wonderful family and Carli is an amazing, brave woman ❤️
and she is thankful for everything in her life
she is an inspiration
I wish her family all the best
army💜😏
Kim Seokjin yeah💜
I want your pfp qwq
an* inspiration
Careful kid im a grammar police
Jimin awwww
This could happen to anyone of us, a very small percentage would have the good spirit this girl has. Makes you think...
Amazing that she had such a good doctor to spot the condition. I can’t believe the photos of her back. Thank goodness that her parents and health professionals are supportive.
This is amazing I love how she’s treated like a normal human, I’ve always despised people who treated someone different just because they had something wrong with them
when they treat with Bullying and shit or when they give her too much attention. I know people who hate both
IK IT IS SO ANNOYING
Its usually the opposite...people want them to be treated special
This video makes me realize how people are fighting to live, while some of us aren't being as healthy as one can be.
No, we all are trying to keep up with life, just in a different ways. Stop trying no minimize other's problems
Watching these type of videos make me realize how fortunate we really are.
You have wonderful parents. My dad almost abandoned me when I was diagnosed with lupus.
Whats lupus
The internet will tell you everything you need to know brother
These types of videos should help people remember how lucky they are to have good health. Life is not fair, short, and extremely special. Live it like your a hero in your own movie and never look back!
💝🤗
💗
I know all people say "wow she's so strong" but DAMN she is strong. I wouldn't even get out off bed in the morning and this young woman just lives her life the best she can
often its not what you do , more what everyone else does arround you.
Alot of Help from Family , Friends , Boyfriend.
Which most depressed persons dont have.
Exept theyre healthy
I hate myself for being always negative and judgemental about my life but after seeing her I m so blessed. God bless her... She is a fighter💖
Don't beat yourself up. Just thank God for whatever you do have, forgive yourself and move on. God bless you
Stop comparing your life to others. Be blessed in what you alone have, not what more that you have compared to others. x
What a sweet woman, I admire her strength and determination. She seems lovely, I hope that one day they will find a cure.
"I stand like a flamingo" I thought that was too cute! What a great sense of humor you have! ☺️
I'd call it decent not great though on that part
Yup people who find humour in their own suffering are usually the strongest
@@blessings1063 like making fun of autistic and outcast people even though I'm one right?
@@keycrafter7471 in their OWN suffering
@@keycrafter7471 gosh what a hater
A little laugh, a little promise, a little Hope. Damnit where did the tears come from
Her boyfriend is a blessing,cause he is not judging her by her body like others boys do nowadays 🙁
Her body looks good anyways though.
YEAH oh yeah well what does it even mean you saying this to happen
@@Y2Kr4SHM4N I hope so that there are some.
@@Y2Kr4SHM4N so if you like having sex you can't be a good lover
What a dumb logic
@@Y2Kr4SHM4N it's not always without sex because sex is also the part of loving someone.
"Not often do you need to talk to the ground" 😂😂❤️❤️
I hope she gets cured and lives a healthy life ahead !!! Hope is what keeps us going 👍Hats off to her parents who have been with her through all this !!
Amen! Let's pray for a cure! 🙌🙏
I dont
@@lilrayray8107
why not.
amen
@@lilrayray8107 Why?
Honestly. I feel so bad. These are some things so many people take for granted....If only more people knew how lucky they were.
We can hear and see fine, move and think for ourselves. I feel blessed for being able to do these things.
Suddenly felt a need to fix my posture while watching this
That whole family is so cute, im glad and find it amazing that she can still have a normal life and doesn't dwell on it. I hope they find the cure soon, sending prayers
“But I always try to look at the positve side and remember what I still have, and I’m thankful for that”. God bless this girl.
she's such a kind soul. I'm glad that she's looking on the positive side of things.
the people in the comments need to hear it so i’ll say it
THE PEOPLE IN THESE VIDEOS ARE NOT HERE FOR YOU TO TELL PEOPLE TO “count their blessings”
True.
Everyone should count their blessings, not just them.
Thank you!!
Danielle despite the fact that i don’t have any disabilities or anything, it sucks when i come here to learn and someone’s like “count ur blessings be greatful” and i’m like “k thanks,,,don’t need to tell me tho” and the first reply to me is correct, we all should when we can, but these people aren’t your reasons why.
@@kyer.8225 Yea no you're right though. I have a disability myself and I absolute hate the pity and the fake positive attitude of people like "your boyfriend is amazing that he wants you despite it" that just translates to me that disabled aren't supposed to find love and if they do it's a miracle.. "if I'd be in your place I don't know if I'd be this happy" so technically my life sucks? Good. I know, don't have to tell me.
So thank you for telling people that they should quit, just compliment them on something personal like their personality or looks and tell them you wish them the best, it's 10x better...
Danielle oof
people suck
the dad “she wasn’t really good but”
liv cox *Mum nudges father and frowns subtly*
He supposed to lie?
i mean, atleast he was positive anyways
@@shocker6093 i think the family had a troublesome past but the future is now
@@shocker6093 um.. yes. She is suffering as it is.
This makes me want to have all the knowledge in the world so I can try and cure such diseases/conditions
May God bless your journey
Try alkaline holistic things like dr.sebi for understanding things
Then try to achieve you goal :)
It's never too late
Do it.
I wish we had cures for everything. Nobody deserves to live like this. It's just so heart breaking. She seems in pretty good spirits though. I wish her the best 💜
Casie Vilk I think they do have a cure for this it’s just so little people have it they don’t produce it
Omg her family, dogs, and boyfriend are so sweet! So supportive aaaaa I wanna cry. Carly you're literally just the most miraculous girlie ever!!! So lucky to be surrounded by these amazing people, too.😘
poot anna .....Why the dogs?....🙄
@@ivyvanderwall they help her by offering physical and mental support.....
His boufriend said he'll be happy when its over haha
🙌💓
People like her, God will always be with them, Amen
Clementine Ahnberg they didn’t have any bad intentions? just because someone partakes in religion and wishes the best for someone doesn’t mean they don’t deserve to live ¯\_(ツ)_/¯ but ig that’s just my opinion
@@beabapoopee toxic kids
Amen, He is close to the broken hearted, and those who are crushed in spirit.
@@patience_brody you may not realize how much pain you have inside you, but how you treat others is always a reflection of how you are on the inside. may you come to know Messiah and be free in your soul. Some of the hardest people, gangsters, murderers, drug dealers, hardcore addicts, etc., people whom I know personally and the environment I also personally come from, meet Yahshua and come to know the greatest freedom theyve ever known. nothing wrong with connecting with the One who created you, and who knows you better than yourself.
The way the mom nudged the dad when he said she couldn't swim good but they still cheered anyway😂
😅😅😅 he casually said she wasn't any good with a straight face. Funny moment
Ik! It was so sweet
That part made me chuckle. XD
This is heart breaking. Had no idea this even existed. So much respect to her and her family. 100% commitment and it's beautiful even though it's such a sad story.
So glad she has a great man like Billy
What makes him so great?
@@muthatucka7436 The fact that he is prepared to support her and her disease. Most men wouldn't want to go through the daily struggles with her, it isn't about her looks. She is stunning in my opinion, it's about the disease. Right now her disease is just getting worse, hopefully, the doctors will provide them with some cure. He knows this, yet he made the decision the move in with her, take the responsibility of her mother's hands and into his own. He is a great man, don't try and take that away from him, I'm sure Carli and her family will agree.
she has a really good sense of humour. "it's not often you need to talk to the ground":D
I have myself a “billy” I’m so thankful she has such a good support system! It truly makes a difference!
My friend Joe has the same condition
Its really sad to see him in pain, but its wonderful to see that he still has joy and fun living
We're getting closer to a cure
In the meen time pray it helps i myself am a cancer surviver (thyroid cancer)
Praying numbs the pain and calms the mind
Hope you get better❤🖤❤🖤🖤🖤❤🖤❤❤❤❤❤❤
Im not lying he does have the condition and i am a cancer surviver i had it in secOnd through fourth grade
I dont understand why i would lie about having cancer and some who has a veryRARE AND PAINFUL DISEASSE
Bruh Finns i hope you both have a amazing life 💘💕💖💕💘💕💖
Are you sure? Only 900 people in the world have it.
@@kristopherwilhite2679 it may be a comment begging for likes but who knows..
❤️wish you guys well
@@nes7490 no I don't think so. If someone u knew had this disease, you most likely would watch tbis video too to see other people with it. Idk🤷♀️🤷♀️
We are so blessed that we don't even notice our numerous blessings & instead focus on few minor things that we don't have.
May God guide us to the right path !!!
Amen!!!
amen
Amen
Oh bless her heart! She’s so beautiful and has such a great family, she deserves to have the best life! God bless you Carli!