Rett Syndrome Personal Stories

 Rett Syndrome Personal Stories


I decided to put together various Rett Syndrome personal stories to enable  new Rett family’s to understand what is happening and to provide the comfort of knowing that they are not alone.

I would like to encourage the “old” hands to share their experiences.  It doesn’t matter whether you live in South Africa or not.

It is especially important to hear about the trials and tribulations of parenting some of the older Rett Angels, so that those of us with young children can know what to expect and how to handle it.

Please be kind enough to either send us an email to or write your experiences and anecdotes in the comment box below.  If you do send information for inclusion in the main body of this site, please send us photographs and/or a video as well if possible.

In addition, we have started a Skype group to enable Moms, Dads, grandparents and anybody else who has a specific interest in Rett Syndrome to chat live; ask questions; and share experiences to join us.  In order to get added to the group, please skype me.  My Skype name is medifox and I am located in Cape Town.  Do ensure that when you make your request, that you mention Rett Syndrome as I would hate to add you to the wrong group.

Rett Syndrome Personal Stories

A Rett Syndrome Mothers Story

A Rett Syndrome Angel is born

Rett Syndrome – Natalie’s Dietary Needs

Our Rett Syndrome Journey With Erin


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