The more we get to know about the Koolen-de Vries syndrome the more we realize that we are still very ignorant. We do not have a clue about what the future may bring us. Additionally there is little to be found on the internet –one of the main reasons I started this blog– and on the limited resources it is not unusual to find contradictory information. We read for example that Thibault would not be able to enter the mainstream circuit for education and employment, while afterwards I read about the mental disability from mild to medium. I saw this through my rose colored spectacles and I wrote this into my description until another mom of a kool kid told me that there are children (including her son) that are severely mentally challenged. Concerning the motor and physical, the spectrum seems to be less big and we know that Thibault would be able to step, to be trained, however he has an increased risk of craniosynostosis –check!-, heart problems -control scheduled for April 2017- and epilepsy –we are as prepared as we can be- but this is about where the info stops. About how they grow up, how they talk and how they are in general, it is still reading tea leaves in the bottom of the cup…
On the other hand there are already several hundred kool kids ” found ” in the three years that Koolen-de Vries Syndrome is known and through them we could get a look into our future. For a long time I’ve wanted to meet other kool families and although I know about two other kids in Belgium, we did not yet meet other kool kids. And now, there is the study weekend , organized by Mrs. Mandy Hazel Grave of Leeds, the driving force behind the Facebook group “Koolen de Vries Europe“. A total of 26 families registered for what should be an inspiring, but definitely a very intensive weekend. And we will be there!
After the weekend we will be wiser, or at least that is the intention. Not only do we get a unique opportunity to meet other families with a kool kid, we also follow a seminar from dr. Koolen and colleagues, a workshop “Speech“, a workshop on “Sleep” and we go for a picnic all together in the park . Let’s hope for some good weather in England in October …
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