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.