The disease causes bones all over my body to disappear.
I'm in pain every day and every minute of every day.
So I kind of have to do something to get me distracted,
because if I focus on it, it'll hurt a lot more.
I have idiopathic multicentric osteolysis.
This means that I'm tired a lot
because all my bones are, like, putting pressure on something.
Good boy.
Or that the skin and the muscle are basically working
to keep all my extremities together.
So the more I use them, the more I'll be in pain and tired.
Basically, her body is absorbing the calcium from her bones
and essentially making them disappear.
So, Natalia, she's got no carpal bones, no tarsal bones.
And it affects the smaller bones first.
There's just severe deterioration in her knees.
Her shoulders and her elbows are basically held together
by just the soft tissue around there, the nerves.
She's had a motorised wheelchair
since she's been in first grade.
About 2013, it was getting very difficult for me
to carry Natalia.
So we decided to add on to the house
and put the wheelchair lift
and to at least give her the access to her bedroom with her chair
and give her some independence.
We cut her food for her
so that she can, again, be independent and feed herself
to the extent that she can.
But even if I'm having a tough day,
I feel like I want to push through it
because I don't want the pain
to impact on the quality of my life.
I just want my life to be as normal as possible.
It does get a little frustrating,
but I think I've just been able
to figure out a different way to be independent.
Something that distracts me is art.
I like digital art,
so I love drawing on my iPad
because it's sometimes easier than drawing on paper,
which gets me a little tired.
She's very stubborn, but in a good way.
She sticks to her own path,
she doesn't let you deter her from what she wants to do
and sometimes she is right.
She's creative. She does a lot of drawing work,
and she's strong with what she goes through on a day-to-day basis.
It's hard knowing what she deals with, and, like, all the pain.
My mom works from home three days a week,
so she usually helps me in the morning,
and then my dad usually helps me get my breakfast
and then takes me to school.
Thank you very much.
I meet her at the door,
open the door for her.
Oh, hi. Hi.
Hiya!
She prefers to be independent.
I let her be independent
unless she tells me she needs some assistance.
Put it in a new file, right? Mm-hm.
Natalia is a great student.
She does a very, very high level of work,
works very, very hard
and she's one of our best students.
Dr Smith helps me with all the problems
that my bones are having.
Like, at the moment, I'm having shoulder pain.
They haven't really figured out a solution for most of my pain...
But there's still no answer to relieve the pain.
It's just more of managing her pain at this point.
Hello. Hi, Dr Smith. Hi.
Hi, how are you? Good. How are you?
How are you, Natalia? Hi.
How are you doing? Good. How are you? Good. Good.
How has your pain and stuff been lately?
Like, getting the normal, like I've been telling you,
like, the shoulder and the back pain. Right.
This is a very rare condition.
We've only seen a few cases and each child is specific.
Well, I've been following Natalia since she was three years old,
and it's actually poorly understood.
And how has your neck been?
It's the same. It still feels like it's ready to drop
because it feels like a bowling ball in my head, like, the weight...
Do you feel it's weak? Yeah. Yeah.
Is it all day, or...? Yeah, it's all day.
All day, so sometimes I'm...
It gets tiring to sit up.
We've tried different kinds of medications
to treat it and other complicated aspects of this disease.
For us, we expect
that she might have some progression of her disease,
but she should always be fairly functional
in her chair.
We are working with different kinds of adaptive things
so that she can become a productive adult.
I think I'm going to do that one there.
They can go up.
Or we could start the first round and then...
Oh, wait, I can't go.
I like bowling because it sort of gives me a place
to put all my stuff, like, struggles into.
And I don't have to focus on anything else
and I can sort of get out of it while I'm bowling.
OK, put the V on the top.
You know, like, that people may be struggling
with this condition,
and I feel like you should never let it affect you
because there's more to you than this disease.
Ready, set, go.
Hey! Look at that!
Oh!
NATALIA SHRIEKS