Maddison: I'm Maddison, I'm 10 years old.
I have a rare condition called SMARD
and I was born to stand out and not blend in.
Lydia: I’m Lydia Maddison's mom and I'm also her primary caregiver.
SMARD is extremely rare. There's around I think,
probably between 40 to 50 children
in the whole world with SMARD.
When Maddison was diagnosed 10 years ago there was already around
10 to 15 cases in the whole world.
So it was a quite scary time
because obviously there was nothing known about SMARD and
there's still really not much known now.
Her legs are quite weak, so she has to use a wheelchair to get around.
She can't stand or she can’t walk.
It also affects her diaphragm which is a breathing muscle.
Being told that my youngest has this life threatening
condition it was, it was very scary.
Maddison: Hello Toredo, thank you for letting Clarence have the corner.
Lydia: They said that she wouldn't live past two years old
If we didn't ventilate her.
There's no way that anyone with SMARD could live
because their diaphragm is completely paralyzed.
So that's in place 24 hours a day,
if she gets any kind of coughs or cold
that can be still life threatening, even though we've
given her the ventilator and tracheostomy.
Maddison: And some awards for
inspirational child award
and just being great.
Lydia: Yeah, it's a strange term use it as a sacrifice
because honestly, she is my daughter, I don't see it as a sacrifice.
It's just something I have to do as a mother.
It's not anything I would ever change again.
Although life can obviously be a bit tricky and everything
every day is a fight.
Lydia: What do we use the neb for Maddison do you know?
So what does the smoke do?
Maddison: It loosens up
my secretions in my chest.
Lydia: Yeah, we just put you this on for five minutes, don't we?
Then it just loosens all the
secretions and anything that set in your chest.
Maddison: Yep.
Lydia: Which makes it nice and loose.
So it's more comfortable to be able to do your treatments.
Maddison: It doesn't really feel like any …
Lydia: I know but you always it’s your party trick isn’t it?
Maddison: Sometimes it's quite fun to have my treatments
because it's really fun to pretend that i'm like a dragon
dragon and all my friends like, find it funny.
Like I can breathe smoke like this.
Lydia: There's lots of things that I didn’t think would seem Maddison
because the prognosis was quite bleak.
When she was told that we had SMARD we weren't sure
whether we'll see that milestone, so each little
tiny bit is just like
a massive deal.
So yeah every minute’s special.
What you have to do if you don't know what something is?
Maddison: Google. Lidia: Google.
Hi.
Female Speaker: She can stand out.
Female Speaker: Her Sass.
Female Speaker: Her disability doesn't change anything about her.
We just think of her as just one of us
and she's just a good friend
and that’s what makes her
however we don't take her disability
as a disadvantage for her we just do things with her.
Maddison: It’s okay to be different. Female Speaker: Yeah
Maddison: Then you cannot say disabled. Female Speaker: Yeah.
If you have a disabled friend it won’t change anything about them
they're just a friend. So yeah.
Lydia: I think sometimes she can feel a bit different from
other people.
But it's not always a negative thing because
I think from a very young age, we've always known
that Maddison was born to stand out and not blend in.
She's got this charisma. She has like this power
over people if anybody ever meets her it's like
they'll never forget the kind of feeling it
she's got like, this aura
it’s just brilliant yet beautiful.
Jo: She's amazing. She blew me away
from the first day I met her and the family.
They inquired about her joining but explained
that she was in a wheelchair so wouldn't be able to participate
in all three disciplines.
But as she has proven to us over the years,
she can do all three disciplines from a wheelchair
and nothing stops her.
Maddison: I really like to sing, dance
and do drama. That's why I
joined the club.
The one thing I love about performing the most
is probably having like lines
and singing, dancing.
It's just normal really for everybody else.
I feel like a normal person
like I don't really feel anything different.
Jo: She comes every single week with a massive smile.
And got some great friends here
and is achieving so much for a little girl
who was told she couldn't. She pushes herself.
She goes out on that stage and she shines.
Maddison: When people watch this film, I want them to think that
I'm not any different than anybody else
and I hope this inspires them.
Jo: If you took away that wheelchair,
she is a normal child.
She really is but obviously
you can see the wheelchair is there. You can see that
she is slightly different.
She does blend in with the others
but oh boy does she stand out.