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
This means that I'm tired a lot
because all my bones are, like,
putting pressure on something.
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
So, Natalia, she's got no
carpal bones, no tarsal bones.
And it affects the smaller
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
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
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
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.
She prefers to be independent.
I let her be independent
unless she tells me she needs
Put it in a new file, right? Mm-hm.
Natalia is a great student.
She does a very, very high level
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
Like, getting the normal,
like I've been telling you,
like, the shoulder and the back
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
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
They can go up.
Or we could start the first round
Oh, wait, I can't go.
I like bowling because
it sort of gives me a place
to put all my stuff, like,
And I don't have to focus on
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!
Natalia was born with a rare disease called idiopathic multicentric osteolysis, which means her body is slowly absorbing her bones - literally making them ‘vanish.’ The 14 year old deals with constant pain, and it impacts everyday tasks like eating, dressing and going to school. Yet Natalia is determined to not let the condition dictate her life. She has developed a passion for art, is a top student at school and loves to socialise with her friends.
-- Click here to subscribe to BBC Three: http://bit.ly/BBC-Three-Subscribe
Did you know that we’re up to other things in other places too?
Best of BBC Three: www.bbc.co.uk/bbcthree iPlayer: http://www.bbc.co.uk/tv/bbcthree Twitter: http://www.twitter.com/bbcthree Facebook: http://www.facebook.com/bbcthree Instagram: http://instagram.com/bbcthree Tumblr: http://bbcthree.tumblr.com
Oh, we’re on Snapchat too - just incase you were wondering… add us, bbcthree.