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Williams Syndrome Association of SA
PO Box 19113
Tecoma, 5214
East London, South Africa
 
  
 
 
 
 

 
 
The Story of my life.

My name is Johan and I have been living in East London for the last seven years when my family moved here from the country side, a farming community in the district of Delmas where my parents had to travel to Johannesburg every month to see the occupational therapist at the Transvaal Memorial Institute for Child Health and Assesment/Learning Clinics. .

I have graduated from nursery school in November 2002, just after I have turned nine, and started my school career, being a grade one pupil, in January 2003 which lasted only two weeks as my teachers were unable to cope with my special needs , not being able to read or write. I was told to return to my previous nursery class but could not fit in with the new five and six years old and had a very bad time as I could not fit in to any class. I became very distressed and found it hard to walk anywhere, but the doctor's told my parents there was nothing wrong with my heart. On the fourteenth of May that year after having some chips and cool drink at the Wimpy, I was unable to return to our car and my mother had to push me in a trolley and then took me to our doctor who examined me and although he could find nothing wrong, did an ECG because my mother was so distressed.

I went to Cape Town where they did an angiogram and performed an emergency double heart bypass. When I came back from Cape Town the Daily Dispatch and Reach for a Dream came to visit me to see which Dream they could make come true. They bought me a set of drums which I saw at Lee Gold which I never thought would become mine and Steve Hofmeyr fulfilled my first dream which was to sing with him in concert which we did on October 19 2004 during his TOEKA 2 concert in East London! My other dreams which also came true was: a helicopter ride with the Police helicopter at East London Harbor festival; regular visits to Arcadia School where my mother and I learned reading and writing which I could never have done before; and because I really loves him, Japie du Plessis from Grens Hoërskool gave me a red rose and my last dream was to have a friend: I now have my neighbor, six year old Zander Tshetu, who will come and join me on my trampoline or come running along my bicycle all the way to the Joan Harrison pools where my instructor, Joe Hillstrom teaches me how to swim. .

When my tenth birthday was held at Standard Bank, Vincent Park, the television covered the story of the newly founded Williams Syndrome Association of South Africa on SABC 2, Afrikaans bulletin, at seven pm Vincent SPAR baked me a huge, huge cake for my tenth birthday party at the Bank and their Santa visited me during Christmas and brought me a brilliant red fire engine! Oh, I love fire engines and use to go to nursery school dressed in my fireman outfit and white rainboots. At our year end concert in 2002, I had the role of fireman extinguishing the flames (all those dancing girls in their red and yellow costumes!) On my eigth birthday I had a fire engine cake and had a party with my fireman friends at the Fleet Street Fire Station! They took me for a ride in Engine 9, what a great time I have had. Since then I have visited my STATION regularly to check on my fellow firemen: they do make me proud, they are still the best!

I like Leigh Mc Namara from Ashmel SPAR too, as he is always excited to see me and gives me some chocolates. It's true, SPAR is good for you! Oh, and did they find me a beauty for Christmas. Their special gift came all the way from Israel, Engine 55 which operates like a real fire engine. I now have my own fire station: “Elite Fire Station” and a Fire Engine bed built by my friends at ServiStar. Jeanette even put me in the driver's seat and I can sleep peacefully at night! I also visit my police colleagues every month and do some patrolling and check on suspect-vehicles with my Station at the Flying Squad, saying hello to the fellows at our dog unit and sometimes visits the mounted unit. My police friends are very special, too.

East London is a great place to live in because we have the most beautiful beaches and friendliest people at our restaurants and shopping centers where I often go, talking to all my friends! I love
watching the ships coming in to the harbor when I have breakfast at Wimpy Esplanade. Robbie de Lange took me on the freight ship, the Val Karoo where I met Herr Heimut and I went for inspection on the SAS Mendi and learned about the missiles! I would like to see how all the thousands and thousands of Mercedes 180's get loaded in the special freight ships!

When I had to go for the angiogram in Cape Town, I got a second change in life because every one of my friends in East London, black and white, and also those very special friends from Delmas and Pretoria and my cousin in Canada, told me not to be afraid because they would all pray for me. That night, after the heart surgeon, dr Susan Vosloo told my parents that without the operation, I would not survive another three weeks, my mother read from the hospital bible: “He will heal the sick”, I then knew that God would be with me! Thank you East London for carrying us through those difficult times when I could feel that the Spirit of God was living amongst the people of East London.

CedecProductions: Film, Television & Video is doing a documentary on explaining, and raising awareness for the Williams Syndrome People of South Africa through Johan's life story with his
daily visits to the East London community and businesses included in this awareness documentary which will also promote East London community, businesses and artists through Stage Dream.

This production has been presented to Nolene on 3TALK at the SABC. This will bring hope to approximately two thousand sufferers, like Johan, in South Africa for a better future as those Williams children in overseas countries who already have the opportunity to develop to their full potential! The estimated cost of this production is R1 500 of which CedecProductions have donated R10 000 A list of all our Donors will be displayed in the documentary as well as Johan's contact with your store/department filmed in this documentary.The remaining R5 000-00 will be contributed by the East London community and businesses. towards the costs of this production and the awareness campaign of the Williams sufferers. Donations can be made by cheque to The Treasurer, for the Williams Syndrome Association of South Africa or deposited to their savings account number 346676274 at Standard Bank Vincent Park Branch, East London.

The filming of Johan's story began when this twelve year old Williams sufferer approached a group of business men who were having their usual morning breakfast at DULCE ESPRESSO BAR, Vincent Park by asking his police friend, David Book, from the Flying Squad whether he would make him a DVD because his friend, Emerald from EMERALD INTERNATIONAL HAIR DESIGN told him he should send Nolene of 3 Talk his life story! David told Johan that he was a policeman and could not make DVD's but he should ask the filmmaker who was sitting next to him, enjoying a cup of coffee, so Johan did just that and Dirk immediately said yes, and what shall we do? Life is built by trust like that! Johan only has today, there is no tomorrow. This production is about HOPE!

The Parents:

Dries:
When you have a child with special needs, you have to understand that you are dealing with a very vulnerable person, some one who cannot cope with the demands of life by himself!

A special needs child requires much more support from his family and community that the rest of us who all finds life d
difficult at various times.

Magda:

Williams children are smart ànd handicapped, battling with learning barriers which prevents them from participating in mainstream activities. We can only thank Johan's teachers for the wonderful support during his pre-primary years which formed the foundation for developing his non-verbal abilities. Being home schooled, he has now mastered reading and writing.

Dries:

Williams children are gifted and inept at the same time, and Johan has been blessed with a wonderful personality and reaches out to everyone being friendly , caring and honest.

These giftedness have opened the hearts of the people of in East London, and returning this goodwill, support has now been found for the Williams Syndrome children in South Africa.

Thank you to all the people of East London!

 

 
Johan Coetzee.