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I’m 23 & Turning To Stone: Living Differently


It is a rare, genetic condition. It turns muscle tissue into bone, essentially causing me
to grow a second skeleton. My shoulders and neck, my jaw
and my hip affect me the most. My right hip is locked, um, so I stand like a flamingo but my foot doesn’t reach
the ground all the way, which is why I walk
with a limp. So, when I stand, I just have
really good balance. For me, it’s more comfortable
cos if I were to stand, like, with two feet,
I would stand like this… Cos her hip’s locked. ..which isn’t very helpful. So, it’s easier cos I can stand
straight and then talk to someone, whereas if I stood with
both feet on the ground, I’d be talking to the ground. Not often do you need to
talk to the ground. The first thing to go was…there
was a lot of swelling in my back that has caused that, over time, to just turn into a sheet of bone. I have progressively lost more movement in my shoulders and neck… ..um, to at this point
where I have almost none. Okey dokey. So, Carli can’t bend at her waist, she cannot raise her arms
over her head. Luckily, she still has movement
that she can get to her mouth, but I help her with her earrings,
I help her shower. I do her hair… Put her shoes on and we drive her
places that she needs to go. So, I was diagnosed with FOP
at five and a half. I took a really bad fall in 2001 off of the back of a bar stool and had a lot of swelling. The next day we went to the doctor. When we brought Carli in
to have her looked at, that’s when Dr Schmidt
looked at us and said, “You know, I just want
to see her feet.” He looked at her feet and said, “You know, I think I know
what this is.” He wrote it on a piece
of paper and said, “You know, there’ll be some
specialists you’ll have to see.” Basically, that’s when we found out. LORI SIGHS
Success. It can be triggered by a fall, um, or even something
as little as a paper cut can trigger new bone to form
and sometimes it’s nothing at all. I could fall today
and nothing would happen, but if I took
the same fall another day, it could cause me to lose mobility. So, it just…it kind of depends
on what wakes up the FOP Beast, as we like to call it. Come on in. The condition progresses in spurts. These kids tend to grow through a time period where there are a lot of flare-ups. We’re not really sure why. There’s some suspicion that hormonal events that happen during adolescence may be a trigger. So, Carli lives a little differently because it’s difficult for her
to be on her own. Right? She’s a young woman who would probably
like her independence and the ability to get out
and do things on her own and her disease doesn’t
allow her to do that. They took eight teeth out so I can get food through the holes, as I like to call them. Um, but it’s definitely
harder to chew. If there was a sport, I was in it and I was the centre of attention. I just loved everything
about being active. So, I remember my parents
having to slow me down a lot. They never treated me any different. She was on the swim team, she wasn’t
very good, but she competed anyways. Um, and…you know, and everyone
cheered her on. It didn’t matter,
it wasn’t what it was about. It was about her just being her. Do you have this finger in here? So, we’re actually really
lucky for such a rare disease. We have a couple of amazing
doctors on the case. You go and then I go, and then my dad goes and then my mum… This is tragic, I am ruining this, I’m about to lose it right now, this is actually so tragic.
It’s stuck in there. There’s drugs that will, hopefully, prevent bone from forming because of a flare-up. That’s the drug that Carli is on
right now as a clinical trial. Where we’re at today, versus where
we were 15 years ago… ..it’s just amazing. So, this is the piece of bone
that is causing my jaw to lock, which is why I have no movement. And, hopefully, in the coming years, with FOP treatment they will be able to
remove that chord of bone, giving me mobility back. CARLI LAUGHS LYNN YELLS That actually scared me. You have more make-up
than anybody I know, even me. Carli went to three
different colleges, finally graduated from Maryville. I went to Drury,
in Springfield, Missouri. Sometimes Carli will, like, curl
my hair for me and French braid it. But we decided to move in together. Um, that one was actually
instigated by me. Um… She caught me off-guard. There we go. I decided it was
kind of the right time for me to venture out on my own
while I still could. We’re hoping in the next two or
three weeks to be moved in here. There was no real modifications
that we made in here, we just are going to be careful about where we put the dishes and other things
in the kitchen to be able to…be at a level
to where I can reach them. So, here we have the bathroom. This we had to completely gut. And then we also have
a bench that I can sit on and also use to put shampoo and conditioners so that
I can reach it. I’m pretty excited. It’s been a journey,
we’ll be happy when it’s over. I’m just excited to
get into my new home and see where my independence can take me, but it will hinder me as well. It’s definitely
disappointing that I can’t play sports or drive a car or do
this, that or the other thing. But I always try to
look on the positive side and remember what I still have. And I’m thankful for that.

100 Comments

  1. Cee Onexx
    Cee Onexx August 22, 2019

    Lets be humble feel the.
    warmth feel your hearts as you awe in joy in someone elses truimph of strength

  2. vysakh haridas
    vysakh haridas August 23, 2019

    😣😔

  3. M&M
    M&M August 24, 2019

    “Remember what I still have…” – if only the rest of us could be 1/5 as grateful as she is.

  4. Tessy Way
    Tessy Way August 25, 2019

    I broke my leg once and thought I had it bad. Now I’m grateful there’s nothing wrong with me and we really gotta stop complaining about stupid things.

  5. k a r l e y
    k a r l e y August 26, 2019

    Lord forgive me for every time I have ever complained about minor inconveniences

  6. aesthetixa
    aesthetixa August 26, 2019

    I’ve realized that I’ve been taking so many things for granted and this video just breaks my heart 😓😔

  7. stormbeatriz
    stormbeatriz August 26, 2019

    I really needed to watch this right now, I broke both bones of my leg recently and now I can see that it's nothing compared to the desease of this young girl. I'm going to stop complaining and recover fast to enjoy my life as it should be. You are a warrior sweetheart.

  8. Minifridge
    Minifridge August 27, 2019

    Yo, Angelo

  9. Diana L.
    Diana L. August 27, 2019

    Breaks my heart that she has to suffer so much. A big hug.

  10. Kyahh Reed
    Kyahh Reed August 27, 2019

    I am seriously about to cry

  11. Sophing Music
    Sophing Music August 27, 2019

    This girl is so sweet, does not deserve anything like this, not the closest, it's always the nicest people never the horrible people.

  12. Maulana49
    Maulana49 August 28, 2019

    I pray that the doctor's can find a cure to help you Carli🙏🙏🙏

  13. tiffany garcia
    tiffany garcia August 28, 2019

    praying for your safety amen❤

  14. * V L A S S Y *
    * V L A S S Y * August 29, 2019

    I pray she fundsd someone who loves her as much as her par3nts when th3y leave this earth

  15. moth man
    moth man August 30, 2019

    I will not make a jojo's reference
    I will not make a jojo's reference
    I will not make a jojo's reference
    I will not make a jojo's reference
    I will not make a jojo's reference
    I will not make a jojo's reference
    I will not make a jojo's reference
    I will not make a jojo's reference

  16. ItsAlejandraYo
    ItsAlejandraYo August 30, 2019

    I would like to know about her dairy intake…

  17. True Bulu
    True Bulu August 31, 2019

    What a brave brave girl 😢❤

  18. Chole Gray
    Chole Gray September 2, 2019

    You see how the mom shoves the dad after he says, "she wasn't very good on the swim team." So unnecessary.

  19. Warfare Commenting
    Warfare Commenting September 6, 2019

    Swinging our picaxe from side to side

  20. Bloody Key
    Bloody Key September 8, 2019

    4:33 the mother did that because the father screwed up.

  21. Megan Elsa2
    Megan Elsa2 September 10, 2019

    God bless You 🙏 Beautiful!! 🙏

  22. Katherine Rodriguez
    Katherine Rodriguez September 14, 2019

    And then there are others complaining for not having starbucks 🙄

  23. Alina
    Alina September 14, 2019

    what a beautiful girl and uplifting story ❤️

  24. Jim Ivan
    Jim Ivan September 14, 2019

    Firo dyspasia progreaiva a rare condition and there is a chance that the chestplate or heart will grow to bone effectivly sufficating

  25. mash-hoor jonas
    mash-hoor jonas September 17, 2019

    M sorry God…. Forgive me for everything 😔

  26. justin wojciechowski
    justin wojciechowski September 19, 2019

    This breaks my Non existent Heart She seems like such a wonderful person. I am not religious at all but it makes me wonder why I keep getting a pass when somebody as sweet and innocent as this has to suffer.. This is exactly why I feel like religion is a joke… I had my chances I screwed them up. If I could pass my well-being on I truly would she seems amazing.. I have broken 54 bones some were the same ones over and over among other things that have happened I am disappointed with life I wish I could pass on something to help MY HOPES I CAN PASS THOUGH. Hang in there Dear We are watching and people will notice!

  27. justin wojciechowski
    justin wojciechowski September 19, 2019

    I WILL ROOT FOR YOU EVERY DAY DEAR!!! KEEP YOUR HEAD UP AND INSPIRE US ALL TO BE STRONGER!

  28. Luz Collazos
    Luz Collazos September 19, 2019

    She is soo pretty and Amazing!! Increible story! God blessed them

  29. *Kawaii_Pickles *
    *Kawaii_Pickles * September 19, 2019

    Turning to stone? She be turning into bones 🤦‍♀️

  30. cynthia ramos
    cynthia ramos September 20, 2019

    She’s so happy! 😭😭❤️

  31. Joline Sofia
    Joline Sofia September 20, 2019

    the body can be so freaky

  32. jo
    jo September 22, 2019

    she is so strong💗💗 i myself wouldn’t be able to deal w something like this

  33. Uprising Angels
    Uprising Angels September 22, 2019

    She is still beautiful a gift from heaven I hope she lives a happy life

  34. Sacred Sun
    Sacred Sun September 23, 2019

    Strong girl.

  35. Caroline njiraini
    Caroline njiraini September 23, 2019

    Shes glowing..so pretty

  36. Maxwell Klein
    Maxwell Klein September 24, 2019

    Yo, Angelo!

  37. bhadra elangbam bomcha
    bhadra elangbam bomcha September 24, 2019

    Believe in The Lord Jesus! HE can heal you.

  38. noodle
    noodle September 28, 2019

    her parents are so nice-

  39. #lols19 65
    #lols19 65 October 2, 2019

    What a very strong special lady ,, you are an inspiration ,, God bless you an your family

  40. Eric Newell
    Eric Newell October 3, 2019

    She has an amazing attitude

  41. Jasmin 25
    Jasmin 25 October 5, 2019

    Can she die because of it?🥺

  42. sageqwill
    sageqwill October 5, 2019

    So glad she has someone to love her

  43. S. E. Z
    S. E. Z October 6, 2019

    I have Ehlers-Danlos Syndrome which is sort of the opposite problem, I'm so floppy that all my joints can dislocate with minimal force (like adjusting my blankets in bed could dislocate my shoulder and that would not be unusual at all) which can be dangerous for your spine and so on. I understand what it's like to constantly be hypervigilant about harming yourself but never being able to know what's going to cause it. I hopped over a 2 foot "wall" in 2015 and both of my knees dislocated and wouldn't function normally for the next 8 months; I couldn't walk more than maybe 20 feet and had to have custom leg braces made and be driven door-to-door to all my classes (I was a grad student) in a golf cart while I was waiting for them… embarrassing. And I knew I did it to myself by not being careful enough– but sometimes I can do normal person things and nothing happens. I feel guilty if I do push myself too hard by mistake but I feel guilty if I don't try to participate in as much as possible because then I'm "letting my disability win"– though sometimes it's just not physically possible and there's no question of choosing to do it or not; obviously I can't go mountain climbing if I can't physically brace myself against the obstacles without the limb popping out; I would just fall right off the mountain. And you look normal on the outside so people don't always react well when you are having disability problems; I've had doctors think I was faking and make fun of how I looked in my joint braces in really mean ways like schoolyard bullies bc they thought they were dealing with someone misusing the medical system =( (but I have a GP now who is an expert in EDS and will call any other doctors I have to see ahead of time to explain that I do really have this and it's serious). But most genetic disorders are worse than mine imo (people can be born with their hearts outside of their bodies and stuff, and there's her condition).

  44. S. E. Z
    S. E. Z October 6, 2019

    Btw people saying that she's so brave, a fighter, etc– she has no choice. You would be just the same in her situation. I'm sure she gets upset in private and has good and bad days like everyone. And just like everyone, I'm sure she has a lot to be thankful for in life as well as things to complain about. Disabled people are normal people.

  45. Kendra
    Kendra October 7, 2019

    Although there's no cure, my father has fibrodysplasia ossificans progressiva (FOP) and has found a medication that has helped change his life around! Please if anyone has this girls information I would love to inform her of this. He was suffering for almost 20 years before he came across it.

  46. neeleugna
    neeleugna October 8, 2019

    Do you think she can get like surgery that give her more mobility? Like her hip is locked right but is it possible to get a hip replacement or something?

  47. Lil V
    Lil V October 8, 2019

    Billy is an angel..

  48. weeping willow 1966
    weeping willow 1966 October 11, 2019

    Could this lady possibly turn statue like? I'm not being without compassion, far from it. I've broken many bones. I even got into a fight, where I had two fractures to my left eye. My leg has plenty of metalwork from a motorcycle crash, why I'm saying this – I know certain levels of extreme pain. I think its lovely how you've met someone nice, & have been with them six years. I like her mom when she elbowed the lady's father, when he said she was no good on the swim team. Good luck in the future.

  49. SWATI CHAUHAN
    SWATI CHAUHAN October 13, 2019

    Girl you have a really beautiful smile … Thank you for inspiring me

  50. slime girly girl
    slime girly girl October 13, 2019

    Why is People just disliking this, This is full of great content and is so inspiring 😡😠

  51. MiraJane D
    MiraJane D October 13, 2019

    This may be an ignorant question, but isn’t it possible to remove the bones that hinder her movements through surgery?

  52. Mahpara Ahona
    Mahpara Ahona October 14, 2019

    She’s so strong. I love her.

  53. KSMaxiefan01
    KSMaxiefan01 October 15, 2019

    It’s lucky that she was diagnosed after her first injury. A lot of kids are misdiagnosed and get surgery multiple times to remove “growths” and it makes it worse. I heard of one girl who’s arm got amputated unnecessarily

  54. Eason Low
    Eason Low October 15, 2019

    She has a great boyfriend tho
    He has some serious defecation,caring for her

  55. Ryan Tobin
    Ryan Tobin October 15, 2019

    Sending prayers 🙏 and love ❤

  56. Curtis Newton
    Curtis Newton October 17, 2019

    I am 43 and I dont give a shit

  57. sonny baldwin
    sonny baldwin October 18, 2019

    Praying for this young lady.

  58. Jen H
    Jen H October 18, 2019

    For humans like Carli I studied cellular biology. To reach out, to help, to cure. Sadly I fell sick and cannot work in this field anymore. I gave it all I had, sorry Carli!
    I also learned to look forward and not behind anymore.
    Wishing you all the Best Carli.

  59. Charlotte Rushforth
    Charlotte Rushforth October 22, 2019

    omg the poor girl i love people who are strong and dont complain about problems shes so sweet god bless her heart

  60. Bernie Sanders Is A FAG!
    Bernie Sanders Is A FAG! October 24, 2019

    No blowjobs for the boyfriend…

  61. Oscar Garcia
    Oscar Garcia October 24, 2019

    She’s a beautiful woman she’s strong and a kickass girl she’s an angel 💖💖💖

  62. RW9632
    RW9632 October 25, 2019

    That’s a nice house

  63. montearchie
    montearchie October 25, 2019

    I would literally give up on life if this happened to me. This girl is a fighter. Respect to her.

  64. Singh Anmol preet
    Singh Anmol preet October 26, 2019

    If we filter her blood to remove calcium regularly, maybe we could stop it?

  65. Holy Viper
    Holy Viper October 26, 2019

    she is not beautiful she is ugly asf

  66. You on Kazoo and morgz are satanic.
    You on Kazoo and morgz are satanic. October 29, 2019

    She may be turning to stone, but she is a beautiful flamingo statue.

  67. Angela James
    Angela James October 30, 2019

    Beautiful soul! ♥️ U CARLI!!

  68. Yasmin Styles
    Yasmin Styles October 30, 2019

    I’m so thankful for my life and health😭

  69. Yasmin Styles
    Yasmin Styles October 30, 2019

    She’s really adorable and just so gorgeous 😍 I admire her courage

  70. plasma ball
    plasma ball October 31, 2019

    I want to be friends with her

  71. food ff
    food ff October 31, 2019

    Yes indeed she is bravest girl i have ever seen such a positivity at that extent hats off to you…and some words for her awsm great boyfriend OH GOD this man makes me believe in humanity…i love both of you..May you guys always remain smiling and have a complete and fulfilled life..i just want to say that yes I LOVE BOTH OF YOU😊

  72. Sumi Munia
    Sumi Munia November 1, 2019

    May Almighty Allah helps her

  73. Dee Znuts
    Dee Znuts November 1, 2019

    Why can they jus break that bone in her jaw so she can eat

  74. poptart6662012
    poptart6662012 November 2, 2019

    jesus. how do you go ON knowing its only going to get worse?

  75. Charmaine Law
    Charmaine Law November 5, 2019

    Darnit medusa!

  76. who knows?
    who knows? November 5, 2019

    It's odd, I notice a lot of YT videos showing families with crazy health issues, they always seem to be rich (unless india). Imagine having to deal with a 23 years of your childs disease when you can hardly afford to keep the lights on in the first place?

  77. Eminem Vevo
    Eminem Vevo November 6, 2019

    Where is sam when you need him

  78. Sunny Roy
    Sunny Roy November 7, 2019

    I lost it after just 8 broken bones, still just started physio and knew what long lost muscles felt like… No major issues with or without them but feels arms partially better post 7 years of surgery….

  79. Jayden Butler
    Jayden Butler November 10, 2019

    Okay but can we talk about her breathtaking smile? Even if that's a fake smile, she has that kind of smile that lights up her whole face ❤❤

  80. Galih Candra
    Galih Candra November 13, 2019

    Most people are ignorant and don't really use their brain

  81. Remedy 4 Reality
    Remedy 4 Reality November 13, 2019

    Sweet isn’t her dads specialty is it? These people are happy with their lives & live it to the fullest & boyfriends….Man, maybe if I got over my insignificant woes, I could get there too!!

  82. Edvárd Gondi
    Edvárd Gondi November 14, 2019

    Assisted suicide is legal in Switzerland. It should be legal in every country.

  83. thomas mccaffrey
    thomas mccaffrey November 14, 2019

    The neighbor I grew up with had this. He killed himself when he was 18. So sad his parents were devastated and their only child

  84. Harun Omar
    Harun Omar November 14, 2019

    Wtf mental illness is growing
    I have ocd,to may God save, us everyone

  85. Pavel's Mom
    Pavel's Mom November 15, 2019

    Girl, you are all around AMAZING and inspirational!!

  86. Nagato the destory fo evil
    Nagato the destory fo evil November 17, 2019

    This is a warning if mankind keeps the doing what there doing there will be worst judgment than being turned to stone.

  87. Odezu 666
    Odezu 666 November 19, 2019

    Ur dick when u wake up be like.

  88. HooverDude 60
    HooverDude 60 November 19, 2019

    She is so statuesqe !!!!!

  89. ʕ•ᴥ•ʔ mimi
    ʕ•ᴥ•ʔ mimi November 21, 2019

    Damn that house is beautiful oh my gawsh

  90. Apostol Luka
    Apostol Luka November 21, 2019

    jojo rock disease is real it seems

  91. ANKITA JAMWAL
    ANKITA JAMWAL November 22, 2019

    It's so awesome to see people with real problems with a big smile..
    And we normal people always cry over teeny tiny problems .

  92. Green Tea
    Green Tea November 24, 2019

    Can just say THAT HOUSE THO

  93. Plasma Ball
    Plasma Ball November 28, 2019

    “Turning in to bone”. Not stone
    But at least they get it

  94. Bennett Lieberman
    Bennett Lieberman November 28, 2019

    Wonder if she’s gotten her medical card yet

  95. Joshua Bartlett
    Joshua Bartlett November 28, 2019

    This story is very sad. It makes you realize how much we take for granted every day without thinking this could happen to us. Very strong young woman.

  96. LABAIK YA RASOOL ALLAH
    LABAIK YA RASOOL ALLAH November 29, 2019

    استغفر اللہ

  97. BR Y
    BR Y November 30, 2019

    It's sad to see people suffer from so many diseases. Our creator did not plan things to be this way. But he promises in the near future that sickness and death will be apart of the past. Isaiah 33:24 and Revelation 21:3-5. Mankind is so in need of God's Kingdom the only solution to mankind problems. Matthew 6:9,10 see JW.ORG

  98. 「 Charmlesseul 」
    「 Charmlesseul 」 December 1, 2019

    R.i.p Johnny Joestar, best JoJo

  99. zim j
    zim j December 2, 2019

    ♥♥♥♥♥♥

  100. Very Nice
    Very Nice December 2, 2019

    the doctor sounds like john malkovitch

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