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.
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 because if I were to stand like with two feet, I would stand like this.
Because her hips locked.
So it's easier because 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.
To at this point where I have almost none.
Okey dokey.
So Carla can't bend at her waist.
She cannot raise her arms overhead.
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.
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 your 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.
It can be triggered by a fall.
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 kind of depends on what wakes up the 'FOP beast', as we like to call it.
The condition progresses in spurts.
These kids tend to go 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.
But it’s definitely harder to chew.
If there was a sport, I was in it and I was the center 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.
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.
So we are actually really lucky for such a rare disease.
We have a couple of amazing doctors on the case.
You will and then I go and then my dad goes, and then my mom
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. It is a clinical trial.
Where we're at today versus where we were 15 years ago.
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 cord of bone, giving me mobility back.
You have more makeup 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.
We decided to move in together.
That one was actually instigated by me.
She caught me off guard.
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 we moved in
and 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.
And then we also have a bench that I can sit on and also
use to put shampoo and conditioners that I can reach.
Well, she'll have to cook her own meals.
Basically, Carli doesn't cook.
Billy will be cooking.
She's going to have to learn to live on her own.
Yeah, we're scared but we're excited at the same time.
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.