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

 
 
What's happening in the Williams Syndrome Community

Watch this space for posts on things in the Williams Syndrome Community.

A big move for the Coetzee’s
Dries and Magda Coetzee, founder members and CEO and secretary of WSASA for the last 6 years (formerly from East London) have moved to Keetmanshoop in Namibia, for work related reasons. Although they now don’t live and work in South Africa anymore we are fortunate that they will still be fulfilling their roles in WSASA. Digital technology has improved so much over the past few years that the world has indeed become a village and borders have become less of a barrier to communication. They will still be there to answer any questions and assist you in finding the right Williams syndrome support group in your area in the RSA.  You can also contact Tanja Holtzhausen (RSA) at tholtzhausen@mweb.co.za (PRO and Member of WSASA) if you have any questions or queries regarding Williams syndrome and WSASA.


Series of Informational Symposiums around the country
The Series of Informational symposiums held from 26 October – 6 November 2009 at medical schools around the country were very successful! Terry Monkaba, executive director of the Williams Syndrome Association of America and Tia Sager, a specialist in Recreation Therapy (also from the US) presented these symposiums with local specialists in the medical field.  Attendees included doctors paediatricians, occupational and  speech therapists, dieticians, educators, parents and family members.  The symposiums covered aspects relating to the medical, educational and social issues regarding Williams syndrome and how to best address them.  Venues included the the medical schools of the University of Pretoria, Stellenbosch University, University of the Free State, Nelson Mandela Medical School in Durban and Johannesburg Hospital.  We would like to thank all the professionals who contributed to the symposiums for their invaluableC:\Users\3GUSER\AppData\Local\Microsoft\Windows\Temporary Internet Files\Content.Word\100_2969.jpg input and sharing of knowledge – we believe that the symposiums will serve as a starting point for the better diagnoses and treatment of more Williams syndrome individuals around South Africa.  


Our first Newsletter "Heartfelt" appeared in March 2009!  Please contribute to our future newsletters by sending your article or letter to Jeanine Coetzee at  tholtzhausen@mweb.co.za.  Any WS stories, photo's, tips from a WS family to others, your questions and experiences that other could benefit from!  The newsletter will be circulated via e-mail.  Because of financial limitations, hard copies can only be sent by prior arrangement.  Please contact Magda Coetzee if you would like to receive a hard copy via ordinary mail.


Thank you

A big thank you to Avis Car Rental for your very generous discount towards the hiring of the two vehicles needed to travel between the different venues of the Travelling Symposiums.  As a non-profit organisation we are totally reliant on fundraising efforts and donations to cover our expenses and would not have been able to present these symposiums without their very generous contribution


Williams Weekend 2009, Stonehenge River Lodge, Parys, Free State

The first Williams syndrome Weekend for families with a Williams syndrome member was held at Stonehenge River Lodge just outside Parys in the Free State from 31 October – 1 November 2009.  It was great fun and very informative! Terry Monkaba and Tia Sager lead  the workshops sessions with parents in the conference room while Music Therapist Liesl du Plessis with her assistant Marica entertained the younger and older group of kids with Williams syndrome (and their siblings) with drumming sessions, singing and dancing and musical games. Tia too had very playful and fun sessions with the younger and older groups and also showed the parents which techniques they can use to teach children basic and more complex concepts and life skills.
11 Students from the North West University kept a watchful eye over all the children(19 with Williams syndrome) while playing on the jumping castle, drumming away on the big drumset and dressing up in funny costumes.  Ann Parker of Puppets and More presented an incredible puppet show and the younger children were fascinated and very intrigued by how her puppet could talk all on its own! The older WS group had the chance to talk about their feelings and how they experienced being a person with Williams syndrome in the everyday world with Hilde Liebenberg, a trained facilitator with an honours degree in clinical psychology. The day was concluded with a short river rafting experience with Werner from Stone Adventures and everyone enjoyed the experience of putting on all the necessary safety gear, getting on the big truck and finally having to paddle through deep (and not so deep!) waters of the Vaal River. Children from the Lehlonolo Day care centre and Thabang Society in Parys gave a truly African choral performance for the less adventurous attendees which the all the spectators enjoyed tremendously.

On Sunday 1 November Truter Odendaal came to sing a special Happy Birthday song to Anezka Terblanche and Johan Coetzee (both with WS) who celebrated their birthdays on the weekend and Zimbo the clown gave a very entertaining children’s magic show. 23-year old Ben Monkaba dressed up in his full clown suit and joined Zimbo in entertaining the younger children.  All the WS kids received great gifts that were generously sponsored by Andre Bekker of Phase 2 Cd’s Music Stores.  Music is always a great gift for our children, we truly appreciate your wonderful gesture.

Thank you

We would sincerely like to thank everyone who contributed to making the weekend such a big success, in particular Stephen le Roux and the very competent staff of Stonehenge River Lodge, Liesl du Plessis and Marica, Ann Parker, Zimbo the Clown, Almud from the Thabang Society in Parys and Truter Odendaal for all being so generous towards us and helping us make the weekend fun and entertaining for everyone.

And to Terry and Tia, we are eternally indebted to you for the wonderful knowledge and information you shared with us and for your wonderfully positive attitude and energy. It has made us realise that with the right attitude and guidance our children can lead productive, happy and fulfilling lives.

C:\Users\3GUSER\AppData\Local\Microsoft\Windows\Temporary Internet Files\Content.Word\WS Weekend 09_2 061.jpgAnd to all the parents and children who attended our first WS weekend:  It has been a wonderful and very enriching experience to meet all of you. We have gained many new and special friends with whom we can now travel on our challenging but rewarding journey with our kids with Williams syndrome.  We hope to get together again for an even greater event in future!  Please spread the word about WS and WSASA everywhere you can, public awareness has the power to make our childrens’ lives and the lives of other less fortunate families with a WS member much better!


If you want to make a donation or sponsorship, please contact Magda Coetzee at williamsyndromesa@sainet.co.za


Updated information from Terry Monkaba at the Williams Syndrome Association in America is that for the large majority of people, the rate of people with WS is much closer to 1 in 10,000 - that rate is now listed by the National Institutes of Health and many others.
Most doctors feel that while Overly Sensitive Hearing is quite common, actual hyperacsusis is quite rare.
Kidney abnormalities are actually quite common in people with WS.
Most children with WS are not successful in "regular" sports groups, many children and young adults with WS excel in Special Olympics (there are International medalists with WS in Special Olympics in Swimming, figure skating, skiing, golf, horse back riding etc). HOWEVER individuals with WS are much more well known for their, nearly universal unique passion for music far surpasses strengths in other areas. In fact, many individuals who can play instruments quite fluently by ear, sing in many languages and have a greater incidence of absolute or relative pitch than is seen in the general population.


Join the Williams Syndrome SA group on Facebook, as well as the Williams Syndrome group on Google groups! Details are on the “Links to other WS sites” page on this website.

 
 

 

 
PARENTS' STORIES