I’m 23 & Turning To Stone: Living Differently

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 Replies to “I’m 23 & Turning To Stone: Living Differently”

  1. If people maybe make fun of her, shes a beautiful angel in my world and shes a great fighter.

  2. Awwe im soo glad that she was able to move in with her boyfriend , give her some freedom to live a real adult hood. I Pray !! She lives a happy life ! God Bless. . You Go Girl !!!!!!!! 🙏🙏👍💛

  3. You are a wonderful, brave, beautiful woman that inspires us all. I will pray for you that modern medicine helps you fight this rare condition. You are loved.

  4. What a cruel & gruesome disease. Per chance gene therapy & hip replacement could offer some hope. Cheers!

  5. why can’t they like shave down the bone? liek i know it will like form again but idk like if my jaw locked i would like have so many panic attacks like even just a small amount of time being able to open it would be nice

  6. I hate that something like this exist… hurts my heart… she has a beautiful spirit and I wish nothing but the best for her.

  7. May God bless you with some peace of mind,you will be able to do way more one day , we Al will when we get home.

  8. My five year old cousin had this disease, before it effected her, she would go to the pool every day, and every time she saw us, she would ask us if we thought she was beautiful, we would tell her that she is the most beautifullest girl in the world, when it started to effect her we didn't get to see her as often, she died before she turned six.

  9. People take so much for granted it honestly hurts my heart this poor young woman has this terrible disease and people worry about stupid stuff like Danielle cohn who lies about her age what is wrong with the world. tsk tsk

  10. It's hard to like this video do to the amount of pain And suffering 😢 but I like this video because of her courage and strength 🙏

  11. i crashed my motorcycle 2 days ago on my way to work, i got several wounds on my hands and legs, i couldnt go to work now and i thought i was very unlucky. i work as cook department so i really hope my hands will recover as soon as possible

  12. Sometimes you just should take the time an be grateful for what you have there are some people who don't understand there are people dealing with worse

  13. I developed seizures at the age of 6 and still to this day no one knows why I am not able to eat lots of sugar I have to get lots of sleep I can't get to over heated the doctors told me I could out grow them an I stopped taking the meds and stuff I needed to I stopped have seizures they came back worse and dealing with depression it doesn't help but I wake up everyday being happy that i have a bed to sleep on money to get a doctor to helping a roof over my head and I have food and I think everyone should be happy for what they have some are luckier than others but no one is better than someone else because they have more everyone goes through tough things everyone gets sad everyone have emotion just remember even if you don't want to live and you feel like no one cares your lying to yourself there is always someone there who does care whether or not you know everyone deserves to be equal

  14. When my mum watched this:
    After she watched it: See, this is why you shouldn’t complain about your body..there are people who want it easy like you do, but cant.

  15. You are a beautiful brave woman, I have arthritis and sometimes I feel like I can't get up from the floor are do too much with my hands my prayers are with you .

  16. I have a rare genetic condition as well that effects my conective tissue that basicly turns me into a human rubber band. If you want to hear about my story follow me and my service dog on ig @loganandoliver

  17. This girl is super inspiring 🙂 but isn’t there a way every couple of years or so she can go in for surgery and they can remove the extra bones like in her mouth or shoulders so she can regain moving her whole mouth or moving her neck?

  18. Without even looking at the comments below I can imagine there are loads of "God Bless her" style comments – if there was a God surely he'd do something to cure her?

  19. Seeing her makes me realize how lucky I am. I have many problems but my life could be harder. I'm so happy for her. She has support and she seems so strong. I hope she can power through until we find a cure.

  20. 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.

  21. 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.

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

  23. 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

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