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My name is Zario

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<strong>My</strong> n a m e <strong>is</strong><br />

<strong>Zario</strong>


<strong>My</strong> n a m e <strong>is</strong><br />

<strong>Zario</strong><br />

Original story: Emile Smith<br />

Adapted story: Gerda Brown, Robert Scott and<br />

Dominic Brown<br />

Editing: Keith Richmond<br />

Illustration: Divan Joubert


Our story begins with 12-year-old <strong>Zario</strong>.<br />

He lives on a farm with h<strong>is</strong> mom and dad<br />

as well as many farm animals.


<strong>Zario</strong> loves playing barefoot on the farm with h<strong>is</strong><br />

puppy, Zigi. The green grass tickles h<strong>is</strong> legs and feet<br />

and makes him smile. H<strong>is</strong> smile sparkles in the<br />

sunshine.


<strong>Zario</strong> loves school, and h<strong>is</strong> classroom has lots of<br />

colourful pictures on the walls.


“We are not allowed to make no<strong>is</strong>e in class.”<br />

<strong>Zario</strong> shares h<strong>is</strong> desk with h<strong>is</strong> tall friend,<br />

Brey. Their desk looks like a paintball field<br />

because they love drawing cars and bugs on<br />

it.


Back at home, <strong>Zario</strong> looks in the mirror. He sees that<br />

h<strong>is</strong> tummy <strong>is</strong> sticking out and h<strong>is</strong> shoulders are pulled<br />

back. “What <strong>is</strong> happening?” <strong>Zario</strong> wonders.


He starts to look and feel different.<br />

He also starts to fall a lot.<br />

One day he falls at school. The<br />

other kids surround him and<br />

laugh.<br />

<strong>Zario</strong> feels very ashamed and starts crying but luckily<br />

h<strong>is</strong> good friend Brey comes to help him.


That afternoon when<br />

<strong>Zario</strong> comes home he <strong>is</strong><br />

very sad and confused.<br />

He tells h<strong>is</strong> mom that he<br />

had fallen at school and<br />

that he couldn’t get back<br />

up.<br />

H<strong>is</strong> mom hugs him tightly<br />

and says that they should<br />

go to see the doctor.


Together <strong>Zario</strong> and h<strong>is</strong> mom go to Hospital Hill to see<br />

Doctor Thomas.<br />

The doctor’s room looks like a science lab. Strange<br />

calculations are written on the walls and it has lots of<br />

strange objects all around.


Doctor Thomas tells <strong>Zario</strong>, “Don’t be afraid, I will help<br />

you”.<br />

The doctor does all sorts of strength<br />

tests on <strong>Zario</strong>’s arms and legs. He<br />

<strong>is</strong> asked to walk around and also to<br />

sit down on the floor and stand up.<br />

He also has to have h<strong>is</strong> blood drawn<br />

for Doctor Thomas to test. <strong>Zario</strong> <strong>is</strong> a<br />

bit scared of the needle but h<strong>is</strong> mom<br />

holds h<strong>is</strong> hand tightly.


Doctor Thomas tells <strong>Zario</strong> what he<br />

has found. <strong>Zario</strong> has muscular<br />

dystrophy.<br />

The doctor says: “Anyone can get<br />

muscular dystrophy, and it <strong>is</strong> not<br />

because you have done anything<br />

wrong. Your muscles will get weaker<br />

over time.”


<strong>Zario</strong> feels that muscular dystrophy <strong>is</strong> an alien inside h<strong>is</strong><br />

body. The alien makes h<strong>is</strong> muscles very tired and weak.<br />

To help him move around, <strong>Zario</strong> <strong>is</strong> given a wheelchair<br />

from the Muscular Dystrophy Foundation.<br />

<strong>Zario</strong> <strong>is</strong> happy that he doesn’t have to worry about<br />

falling anymore.


The muscular dystrophy alien makes<br />

<strong>Zario</strong>’s muscles weak. H<strong>is</strong> hands and<br />

arms cannot lift things anymore. He<br />

has to use h<strong>is</strong> wheelchair more<br />

often too.<br />

Bath time becomes very different<br />

for <strong>Zario</strong>. At home, a bath lift hangs<br />

over the bath so he can get in and<br />

out more easily. <strong>Zario</strong> wants to bath<br />

alone but h<strong>is</strong> parents have to help him.


<strong>Zario</strong>’s school has stairs and he needs a ramp for h<strong>is</strong><br />

wheelchair. So he has to go to a new school where he<br />

can easily move around between the classrooms and<br />

during break time. At the new school most of the other<br />

children also have wheelchairs and some have<br />

crutches.


<strong>Zario</strong> settles in with h<strong>is</strong> new friends. Some of<br />

them also have muscular dystrophy. H<strong>is</strong> new<br />

friend, Yaya, has muscular dystrophy too.<br />

Another new friend <strong>is</strong><br />

Remz, who <strong>is</strong> using a<br />

wheelchair because he<br />

had been in an accident.<br />

The three friends love to spend<br />

time under the shade of the big<br />

trees drawing superheroes.


That night, while <strong>Zario</strong> <strong>is</strong> sleeping, something wakes<br />

him up. He opens h<strong>is</strong> eyes and sees something<br />

amazing! The most beautiful fairy <strong>is</strong> shimmering in the<br />

moonlight. H<strong>is</strong> room <strong>is</strong> filled with all the colours of the<br />

rainbow.


The fairy says: “I am from a world far<br />

away called Green World. It <strong>is</strong> the<br />

happiest place of all. The most<br />

beautiful gardens grow there<br />

and birds chirp the whole<br />

day long. But the secret of<br />

th<strong>is</strong> amazing world <strong>is</strong> that<br />

the big smiles of the people<br />

living there keep the spirit of<br />

Green World alive and make things<br />

grow. Someone has stolen the<br />

smiles and now our world lost its<br />

colour and will surely die. <strong>Zario</strong>, we<br />

need your help to find the stolen smiles<br />

in Green World.”<br />

<strong>Zario</strong> asks the fairy: “Why<br />

have you chosen me? <strong>My</strong><br />

muscles are weak and I<br />

am not strong enough to<br />

be a hero.”<br />

The fairy responds: “You<br />

are uniquely created for<br />

Green World because you<br />

have a secret ability within<br />

you. If you close your<br />

eyes and think really hard,<br />

you can make anything<br />

happen.”


<strong>Zario</strong> feels totally different.<br />

He feels like the hero he<br />

has always dreamt of being.<br />

When he looks down he<br />

sees that h<strong>is</strong> pyjamas have<br />

changed too! He <strong>is</strong> wearing<br />

a green and white superhero<br />

costume, and h<strong>is</strong> hair has a<br />

green stripe in it.<br />

<strong>Zario</strong> now has another <strong>name</strong><br />

. . . Captain Muscles!


<strong>Zario</strong> looks around h<strong>is</strong> room and sees that, amazingly,<br />

the colour has gone, and he real<strong>is</strong>es he <strong>is</strong> in Green<br />

World. Everything <strong>is</strong> dark and grey because the smiles<br />

have been stolen.<br />

“Beware, young hero, for great evil dwells in Green<br />

World,” the fairy says from above.<br />

“I will save Green World by getting everyone’s smiles<br />

back,” Captain Muscles replies.


Captain<br />

Muscles<br />

Captain Muscles does not<br />

know where the smiles are<br />

hidden, so he closes h<strong>is</strong> eyes<br />

tightly and uses h<strong>is</strong> power<br />

of mind control to locate the<br />

smiles. They are hidden away<br />

by the evil villain known only<br />

as “Dystroya”.<br />

He arrives at Dystroya’s hideout. There are no<br />

colours here and all <strong>is</strong> dark. The only thing he<br />

can see <strong>is</strong> a dark hooded figure and a giant<br />

cauldron filled with the stolen smiles.


Captain Muscles real<strong>is</strong>es that the dark figure <strong>is</strong> Dystroya.<br />

Dystroya yells: “I know you are here for the smiles. I<br />

won’t let you have them!”<br />

Again Captain Muscles closes h<strong>is</strong> eyes tightly and<br />

imagines the whole of Green World smiling.


Colours begin to shine throughout the darkness<br />

and Dystroya begins to panic. He knows he <strong>is</strong><br />

losing h<strong>is</strong> hold on Green World’s smiles. “I won’t<br />

let you win!”<br />

Captain Muscles replies: “Green World will never<br />

stop smiling.”


Suddenly the cauldron begins to shake and finally it<br />

bursts open. All the smiles escape and soar like<br />

shooting stars across the sky. The smiles are in a great<br />

hurry to return to their owners!


In no time at all, Green World begins to shimmer with<br />

colour. Joy and harmony are restored.<br />

Evil will never again enter Green World.<br />

Now the smiles are here to stay, forever!


The next day at school, <strong>Zario</strong> sees all the children<br />

smiling. He knows that he has saved the day.<br />

If you set your mind to it, wonderful things are possible!


About the author<br />

<strong>My</strong> <strong>name</strong> <strong>is</strong> Emile Smith, Meemo the<br />

human f<strong>is</strong>h. I’m 26 years old and I’ve been living with<br />

Muscular Dystrophy for more then 15years. I ride in a<br />

wheelchair sometimes, it’s nice to race in the streets<br />

of Worcester. I’ve learned that you should never let<br />

what you can’t do anymore stop you from what you<br />

can do! I love writing, it’s therapy!<br />

<strong>Zario</strong>’s <strong>name</strong> comes from the movie Rio, it’s sounds,<br />

it’s colours and beautiful birds, <strong>Zario</strong> loves to fly<br />

with birds chirping in the sky. <strong>Zario</strong> wants to tell you,<br />

heroes are not perfect but heroes also use wheelchairs,<br />

heroes struggle but heroes smile... You are a <strong>Zario</strong>!<br />

A heartfelt thank you to FC Robb Charitable Trust for<br />

donating the funding to make th<strong>is</strong> book possible.


ABOUT THE MUSCULAR DYSTROPHY FOUNDATION OF SOUTH<br />

AFRICA<br />

The Muscular Dystrophy Research Foundation of South Africa was<br />

founded in 1974 by Mr and Mrs Newton Walker of Potchefstroom, who<br />

at the time had a son affected with Duchenne muscular dystrophy.<br />

They felt there was a need to reach out to other parents and families<br />

in a similar situation and also to support research into th<strong>is</strong> d<strong>is</strong>ease with<br />

the ultimate goal of finding a cure.<br />

Today the Muscular Dystrophy Foundation of South Africa (MDFSA)<br />

<strong>is</strong> a reg<strong>is</strong>tered non-profit organ<strong>is</strong>ation – Reg. No. 004-152 NPO –<br />

cons<strong>is</strong>ting of a national office and three branches (Roodepoort, Cape<br />

Town and Durban) which operate in the nine provinces of South Africa.<br />

The m<strong>is</strong>sion of the Foundation <strong>is</strong> to support people affected by<br />

muscular dystrophy and neuromuscular d<strong>is</strong>orders and endeavour to<br />

improve the quality of life of its members. We ass<strong>is</strong>t affected persons<br />

and their families by providing access to international information<br />

regarding specific dystrophies, workshops, support groups, referral<br />

to genetic counselling and health facilities, and providing ass<strong>is</strong>tive<br />

devices when funding <strong>is</strong> available. We also strive to keep our members<br />

updated via the MDF website, Facebook page and in-house magazine.<br />

National Office<br />

12 Botes Street, Florida Park<br />

Tel 011 472-9703<br />

Website: www.mdsa.org.za<br />

Facebook: Muscular Dystrophy Foundation of South Africa<br />

Gauteng Branch (Gauteng, Free State, Mpumalanga, Limpopo and<br />

North West<br />

12 Botes Street, Florida Park<br />

Tel 011 472-9824<br />

KZN Branch (KwaZulu-Natal and part of Eastern Cape)<br />

Office 7, 24 Somtseu Road, Durban<br />

Tel 031 332-0211<br />

Cape Town Branch (Western Cape, Northern Cape and part of<br />

Eastern Cape)<br />

3 Wiener Street, Goodwood<br />

Tel 021 592-7306

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