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Never give up on your special miracle Ben-#SotosSyndrome

Hi, my name is Jolene Rheeder from Delmas, Mpumulanga. I’m a proud mother of 3 beautiful children. My oldest son Hennie is 16. My daughter Kobie is 14. And then there is Ben, who has Sotos Syndrome, turning 8 on the 29 September.

He was diagnosed on the 25 May 2012 after 2 years being shoved from the one specialist to another; #geneticists; and neurologic paediatrician’s. Feelings like joy and agony, fear and uncertainty went through my mind and heart. It has been said that there are likely many people who have Sotos Syndrome but have never been diagnosed.

It is thought that #SotosSyndrome may occur one in every 15,000 or 20,000 births but many people have never been diagnosed because their symptoms are mild or because they have never been seen by a physician familiar with Sotos; or even #Misdiagnosed as having another syndrome or condition. Yes, we carry a load and yes, we have been shaped by our situation, but we are also so much more. Despite it all we can still find the humor in our circumstances. If the experience of Ben has taught me nothing else, it is to get on with living in the now.

Never give up on your special miracle… I am a mother of a Sotos Syndrome warrior. He is an inspiration and we are so proud. I started looking for Sotos friends in South Africa; and so far there are 16 of us (see collage above). If you would like to join our support group, you can visit

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