About Us

RETT SYNDROME SOUTH AFRICA

What is Rett Syndrome South Africa all about?

 

Sandy and Kim

The Rett Syndrome South Africa website was and is being developed as a direct result of the fact that my granddaughter was recently diagnosed as having Rett Syndrome.

To my horror, I discovered that there is  (or was) no apparent support  for parents in South Africa for this debilitating affliction which affects one in every fifteen thousand girls.

The purpose of the Rett Syndrome South Africa site is :-

  • To keep track of new information related to Rett Syndrome in South Africa and abroad;
  • To provide a place where parents can find information related to various therapies that may help their daughters;
  • A venue where parents can chat to each other directly via Skype;
  • To bring parents’ together so that they can share information or just have a good old rant if needed;
  • A place where parents can swop or sell items that they no longer have a use for, but which others may need.
  • Somewhere that families can put their collective heads together to help raise funds for each other and for the Rett Syndrome Foundation.
  • To provide an opportunity for parents to meet face to face with other Rett Syndrome parents who live within specific geographical areas.
  • A place where caregivers and therapists can also share their thoughts with parents.

My daughter, Kim and I look forward to communicating with you via our newly formed Skype group (please read the support post for more information)  and discussing what we can best do to help our Rett Angels.

Sandy Du Plessis

 

We are each of us angels with only one wing, and we can only fly by embracing one another.  ~Luciano de Crescenzo

God not only sends special angels into our lives, but sometimes He even sends them back again if we forget to take notes the first time!  ~Quoted in The Angels’ Little Instruction Book by Eileen Elias Freeman, 1994

 

 

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{ 13 comments… read them below or add one }

kim June 25, 2011 at 7:54 pm

Thanks Mom for all your love and support, without you and Dad we would be very lost.
Your help with gathering information has given us so much insight!!!!

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Paige Nues June 30, 2011 at 8:18 pm

My heart is lighter knowing there is a support network starting for families of children with Rett syndrome. Please let me know how we can help with materials and information. Do you receive our newsletters? You would probably also benefit from sending a representative to the Rett Syndrome World Congress, starting June 22, 2012 in New Orleans, LA, USA if possible. Wonderful that you are doing this! Paige

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Sandy June 30, 2011 at 10:29 pm

Being rather new at this, I will gratefully accept any materials and information that is available.
I know I signed up for a newsletter from someone, but at the moment with everything that has happened during the last month, I can’t remember which organization it was.
I would love to attend the Rett Syndrome World Congress. Unfortunately at this stage we have absolutely no funds. None-the-less I will do some begging. Can you please send me some details.

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Suzanne Oberholster July 4, 2011 at 1:43 pm

Hello,
We live in America at the moment, but my husband is from South Africa and would one day like to move back. Would it be possible for us to get medical aid for our daughter with Rett Syndrome if we were to move here at some point? Thanks.

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Sandy July 7, 2011 at 6:27 pm

Hi Suzanne,
There should be no problem getting your daughter on to medical aid BUT… a decent Med aid with 100% cover is likely to cost in the region of ZAR 8000 per month for a family of four and it is equally possible that unless your hubby is employed by one of the big name companies, you will probably be obliged to wait a year before any pre-existing conditions are covered.

I will make a note of the Medical Aid issue and do some research for future articles.

All the best

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Julie Bierton July 19, 2011 at 12:37 pm

Hi Sandy,

It’s great that you’ve set up this website. We here at Rett UK have been supporting families in South Africa for sometime, so if we can help in anyway, please get in touch. Working together to support families is so vital.

Kind regards
Julie

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Sandy July 21, 2011 at 10:43 am

Thanks Julie, we still have a way to go though and I am really looking forward to connecting with loads more Rett families on the Rett Chat Forum.

Sandy

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Natacha Seger August 9, 2011 at 12:41 pm

HI Sandy,
I am currently living in Aberdeen, Scotland. My daughter Amy lea is 11 years old and attends Camphill school.
Would it be possible to have any information on Schools who have girls with Rett syndrome in the Fishhoek or Simons town Area.

I do know of Camphill Hermanus, but i think it would be to far to travel everyday.

My Husband and I are returning Home next year September.
Thank you for starting up this website in South AFrica as i know how Helpfull and important Rett UK have been to myself and my Family.

REgards
Natacha

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Sandy August 9, 2011 at 1:27 pm

Hi Natasha,

Yes, Hermanus would be too far – it is more than a two hour drive from the South Side of Cape Town. We will make inquiries for you.

Sandy

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Nina February 16, 2013 at 6:45 pm

Hi Sandy,

My name is Nina and I come from Slovenia, and have a sister , with rett syndrome. We really want contact you, because we think, that more family have more informations and maybe we can help each other, (there in my country, we have 21 girls with rett syndrom).

kind regards
Nina

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Sandy February 20, 2013 at 8:57 pm

Hi Nina, It is great to hear from you. We would be happy to share information with you, though please bear in mind that there has been no Rett Syndrome awareness in South Africa until very recently.

I would recommend that you make contact with http://www.rettsyndrome.org/ the International Rett Syndrome Foundation. Also there are a couple of really great Rett groups on Facebook that you might like to join. “My Daughter Has Rett Syndrome” is one group and “Rett Syndrome Research” is another one.

All the best

Sandy

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Nathalie Bouwman March 19, 2013 at 5:52 pm

Dear South African Rett families, I would like to inform you that the 3rd European Rett Syndrome Conference will be held on 17-19 October 2013 in The Netherlands. You are invited! Have a look on http://www.erscm.eu and on the website of the Dutch Rett Syndrome Foundation http://www.stichtingterre.nl

Kind Regards,

Nathalie Bouwman (Terre’s mom)

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Hilde Midttomme October 8, 2013 at 2:00 pm

We are pleased to be able to inform you that dr Claudio de Felice has been invited to speak at the 3rd European Rett Syndrome Conference in Maastricht October 17-19 2013. The study PARTIAL RESCUE OF RETT SYNDROME BY ω-3 POLYUNSATURATED FATTY ACIDS (PUFAs) OIL by dr de Felice and colleagues was published in Genes & Nutrition in March 2012, and he shall present the findings to the audience at the convention, based on the evaluation and interest from other scientists in the field of RS. In the meantime, the supplement of fish oil as described in the study has been significant to many girls with Rett Syndrome, who have experienced a relief in some of their symptoms. The feedback from those families has been very meaningful to us, and for the same reason we feel the moral obligation to share this information with other families, who may not be aware of the results of the treatment.

The purpose of this e-mail is to inform about the possibility of hearing directly from dr de Felice about the positive effects obtained and the favourable future prospects in the treatment of Rett Syndrome with Omega-3 from fish oil.

The Omega-3 oil chosen by the scientists behind the study, for its purity, bioavailability, absence of side-effects as well as its thorough documentation, was Norwegian Fish Oil Liquid Omega-3. This message has been sent by Transforma AS, distributor of Norwegian Fish Oil products. In order to serve Rett Syndrome families internationally, we have established a distribution facility, which can be found at transformaeurope.mamutweb.com There is no link, commercially or otherwise, between the distributor of the product and the above mentioned scientists.

Please do not hesitate to contact us if you have further questions.

Sincerely,

Attilio Latini Hilde Midttømme
Managing Director Project Manager

Transforma AS, Oslo, Norway
Tel + 47 24 10 28 46

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