Marcus: Grace has had 33 surgeries,
and the journey has been
very intense.
Grace: I just remember screaming,
and the doctor is trying to give me shots.
One thing that really gets under my skin is when people stare.
Marcus: Her team hasn't lost in the last two seasons,
and they're going into the championship game today.
And so there's a lot on the line.
Grace: My name is Grace
and I'm 13 years old.
So my medical condition
is called Escobar syndrome.
It is where my
joints and my muscles are a lot tighter than most people's.
And as well as Escobar's,
I have scoliosis.
Marcus: Grace's childhood has been,
it's a series of ups and downs.
Escobar syndrome is very rare.
To date, Grace has had 33 surgeries.
She gets these joint contractures,
everything from her jaw, her neck,
her hands, legs, arms,
everything just doesn't move as well.
Grace: I have had fixtures on both my legs twice.
That's where they take screws
and they put them in your leg,
twist them and it makes your leg straighten.
The journey has been very intense.
Every time that we do something in the OR,
her genetics want to reverse it.
Her ankle, at one point when she came out of the operating room,
it was at 90 degrees.
And over time, it's reversed some and so now she has pointy feet.
And so that's part of the reason that she wears these braces
to help give her a little bit of stability.
I've had a spinal fusion.
I've had a cleft palate fixing.
I've had jaw stretches,
And I've had a hand surgery.
And I think I've had some more jaw surgeries.
Marcus: Even little things like
getting dressed every morning.
So she needs help getting her braces on.
She can't really
bend down to touch the ground,
she can bend over, but she can't
pick things up off the ground.
I think the medical world
doesn't want to set limitations.
And quite frankly, I didn't want to hear them.
Now we set our own limits.
So I have a YouTube channel.
It is called Grace Nova.
We want to teach people about Escobar's
and teach people about like how to be friends with someone who is a little bit different.
This is what like almost
all YouTubers say. It's a little bit cliche,
but just to make people happy and smile.
Marcus: Grace started a YouTube channel.
This is an opportunity for her to set her own narrative.
Grace: So today I'm actually gonna film a video.
It's called "Things to do when you're bored."
Marcus: Grace has really embraced music.
Sports were often times important in the family,
and she felt a little bit left out on that.
Music is hers.
There are some things certainly she cannot do.
But instead
I'd rather focus on the things we can do.
Grace: I can play almost everything with my right hand.
On my left hand,
I play with just my one finger.
I play in concerts at least three times a year.
One thing that really gets under my skin
is when people stare.
It's just really
annoying and creepy when people stare at you.
Like that.
So that's one thing that kind of bothers me.
I would rather a person come up to me and say,
"Hi, what's your name?"
Marcus: Now there was one instance where
a child said you know, "Why do you look like you look?"
She's like, "Well"
"why do you look the way you look?"
I would say on a regular basis,
she does feel left out.
It's hard for her to keep up.
Grace: There are some moments where I try to be positive but
I just try to stay positive.
Marcus: I've really adjusted my mindset over time that
rather than saying, "Oh, she can't do this,"
or, "she can't play volleyball."
"She can't play piano."
We're just not going to do that.
We're going to give it a shot.
Grace: Growing up, my mom played volleyball.
I want to be like my mom.
We did find a league
where it's for more like beginners.
I'm a very good server.
I'm trying to touch the ball more.
It's just hard for me.
Marcus: She's done very well to hold her own out there.
I think she is the shortest one on her team and
she certainly is not the fastest one on her team,
but she's kind of figured out her niche.
Grace: Today I'm actually gonna play
in the last game volleyball match of the season.
This is our like, last game.
This season and last season,
we have not lost a single game.
I do get super nervous
when I get more nervous whether I was tripping
or falling,
because
for me, it's really hard to catch myself.
So right now we are going
to my volleyball game,
and I'm really excited.
Marcus: I'm very proud of Grace.
She makes the most of her abilities.
To see her out there competing, it really warms my heart.
I just love to see her out there giving it her all.
Sunny: She is tough.
She was able to get in and figure out her serve.
They're great teammates yes.
Some are a little over-protective.
When the ball comes, they want to take it
you know, but she can take it.
Grace: We just won our championship.
It was a lot of fun,
and I'm very happy.
So this is our second season,
that way we're undefeated.
Grace: I think I've just realised,
there's nothing I can do about it,
but I can't really change the circumstances that I have.
So you just have to make the best of it.