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My n a m e is
Zario
My n a m e is
Zario
Original story: Emile Smith
Adapted story: Gerda Brown, Robert Scott and
Dominic Brown
Editing: Keith Richmond
Illustration: Divan Joubert
Our story begins with 12-year-old Zario.
He lives on a farm with his mom and dad
as well as many farm animals.
Zario loves playing barefoot on the farm with his
puppy, Zigi. The green grass tickles his legs and feet
and makes him smile. His smile sparkles in the
sunshine.
Zario loves school, and his classroom has lots of
colourful pictures on the walls.
“We are not allowed to make noise in class.”
Zario shares his desk with his tall friend,
Brey. Their desk looks like a paintball field
because they love drawing cars and bugs on
it.
Back at home, Zario looks in the mirror. He sees that
his tummy is sticking out and his shoulders are pulled
back. “What is happening?” Zario wonders.
He starts to look and feel different.
He also starts to fall a lot.
One day he falls at school. The
other kids surround him and
laugh.
Zario feels very ashamed and starts crying but luckily
his good friend Brey comes to help him.
That afternoon when
Zario comes home he is
very sad and confused.
He tells his mom that he
had fallen at school and
that he couldn’t get back
up.
His mom hugs him tightly
and says that they should
go to see the doctor.
Together Zario and his mom go to Hospital Hill to see
Doctor Thomas.
The doctor’s room looks like a science lab. Strange
calculations are written on the walls and it has lots of
strange objects all around.
Doctor Thomas tells Zario, “Don’t be afraid, I will help
you”.
The doctor does all sorts of strength
tests on Zario’s arms and legs. He
is asked to walk around and also to
sit down on the floor and stand up.
He also has to have his blood drawn
for Doctor Thomas to test. Zario is a
bit scared of the needle but his mom
holds his hand tightly.
Doctor Thomas tells Zario what he
has found. Zario has muscular
dystrophy.
The doctor says: “Anyone can get
muscular dystrophy, and it is not
because you have done anything
wrong. Your muscles will get weaker
over time.”
Zario feels that muscular dystrophy is an alien inside his
body. The alien makes his muscles very tired and weak.
To help him move around, Zario is given a wheelchair
from the Muscular Dystrophy Foundation.
Zario is happy that he doesn’t have to worry about
falling anymore.
The muscular dystrophy alien makes
Zario’s muscles weak. His hands and
arms cannot lift things anymore. He
has to use his wheelchair more
often too.
Bath time becomes very different
for Zario. At home, a bath lift hangs
over the bath so he can get in and
out more easily. Zario wants to bath
alone but his parents have to help him.
Zario’s school has stairs and he needs a ramp for his
wheelchair. So he has to go to a new school where he
can easily move around between the classrooms and
during break time. At the new school most of the other
children also have wheelchairs and some have
crutches.
Zario settles in with his new friends. Some of
them also have muscular dystrophy. His new
friend, Yaya, has muscular dystrophy too.
Another new friend is
Remz, who is using a
wheelchair because he
had been in an accident.
The three friends love to spend
time under the shade of the big
trees drawing superheroes.
That night, while Zario is sleeping, something wakes
him up. He opens his eyes and sees something
amazing! The most beautiful fairy is shimmering in the
moonlight. His room is filled with all the colours of the
rainbow.
The fairy says: “I am from a world far
away called Green World. It is the
happiest place of all. The most
beautiful gardens grow there
and birds chirp the whole
day long. But the secret of
this amazing world is that
the big smiles of the people
living there keep the spirit of
Green World alive and make things
grow. Someone has stolen the
smiles and now our world lost its
colour and will surely die. Zario, we
need your help to find the stolen smiles
in Green World.”
Zario asks the fairy: “Why
have you chosen me? My
muscles are weak and I
am not strong enough to
be a hero.”
The fairy responds: “You
are uniquely created for
Green World because you
have a secret ability within
you. If you close your
eyes and think really hard,
you can make anything
happen.”
Zario feels totally different.
He feels like the hero he
has always dreamt of being.
When he looks down he
sees that his pyjamas have
changed too! He is wearing
a green and white superhero
costume, and his hair has a
green stripe in it.
Zario now has another name
. . . Captain Muscles!
Zario looks around his room and sees that, amazingly,
the colour has gone, and he realises he is in Green
World. Everything is dark and grey because the smiles
have been stolen.
“Beware, young hero, for great evil dwells in Green
World,” the fairy says from above.
“I will save Green World by getting everyone’s smiles
back,” Captain Muscles replies.
Captain
Muscles
Captain Muscles does not
know where the smiles are
hidden, so he closes his eyes
tightly and uses his power
of mind control to locate the
smiles. They are hidden away
by the evil villain known only
as “Dystroya”.
He arrives at Dystroya’s hideout. There are no
colours here and all is dark. The only thing he
can see is a dark hooded figure and a giant
cauldron filled with the stolen smiles.
Captain Muscles realises that the dark figure is Dystroya.
Dystroya yells: “I know you are here for the smiles. I
won’t let you have them!”
Again Captain Muscles closes his eyes tightly and
imagines the whole of Green World smiling.
Colours begin to shine throughout the darkness
and Dystroya begins to panic. He knows he is
losing his hold on Green World’s smiles. “I won’t
let you win!”
Captain Muscles replies: “Green World will never
stop smiling.”
Suddenly the cauldron begins to shake and finally it
bursts open. All the smiles escape and soar like
shooting stars across the sky. The smiles are in a great
hurry to return to their owners!
In no time at all, Green World begins to shimmer with
colour. Joy and harmony are restored.
Evil will never again enter Green World.
Now the smiles are here to stay, forever!
The next day at school, Zario sees all the children
smiling. He knows that he has saved the day.
If you set your mind to it, wonderful things are possible!
About the author
My name is Emile Smith, Meemo the
human fish. I’m 26 years old and I’ve been living with
Muscular Dystrophy for more then 15years. I ride in a
wheelchair sometimes, it’s nice to race in the streets
of Worcester. I’ve learned that you should never let
what you can’t do anymore stop you from what you
can do! I love writing, it’s therapy!
Zario’s name comes from the movie Rio, it’s sounds,
it’s colours and beautiful birds, Zario loves to fly
with birds chirping in the sky. Zario wants to tell you,
heroes are not perfect but heroes also use wheelchairs,
heroes struggle but heroes smile... You are a Zario!
A heartfelt thank you to FC Robb Charitable Trust for
donating the funding to make this book possible.
ABOUT THE MUSCULAR DYSTROPHY FOUNDATION OF SOUTH
AFRICA
The Muscular Dystrophy Research Foundation of South Africa was
founded in 1974 by Mr and Mrs Newton Walker of Potchefstroom, who
at the time had a son affected with Duchenne muscular dystrophy.
They felt there was a need to reach out to other parents and families
in a similar situation and also to support research into this disease with
the ultimate goal of finding a cure.
Today the Muscular Dystrophy Foundation of South Africa (MDFSA)
is a registered non-profit organisation – Reg. No. 004-152 NPO –
consisting of a national office and three branches (Roodepoort, Cape
Town and Durban) which operate in the nine provinces of South Africa.
The mission of the Foundation is to support people affected by
muscular dystrophy and neuromuscular disorders and endeavour to
improve the quality of life of its members. We assist affected persons
and their families by providing access to international information
regarding specific dystrophies, workshops, support groups, referral
to genetic counselling and health facilities, and providing assistive
devices when funding is available. We also strive to keep our members
updated via the MDF website, Facebook page and in-house magazine.
National Office
12 Botes Street, Florida Park
Tel 011 472-9703
Website: www.mdsa.org.za
Facebook: Muscular Dystrophy Foundation of South Africa
Gauteng Branch (Gauteng, Free State, Mpumalanga, Limpopo and
North West
12 Botes Street, Florida Park
Tel 011 472-9824
KZN Branch (KwaZulu-Natal and part of Eastern Cape)
Office 7, 24 Somtseu Road, Durban
Tel 031 332-0211
Cape Town Branch (Western Cape, Northern Cape and part of
Eastern Cape)
3 Wiener Street, Goodwood
Tel 021 592-7306