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Hi Lisa and Nicole! My son also has White Sutton syndrome (he was actually one of the original 5 examined in the Baylor study done by Drs White & Sutton). Good news: there is an active private facebook group of many other parents. In addition, my wife and I have started the ball rolling to get White Sutton Syndrome Foundation going. I'm currently building whitesutton.org (there's a link to the Facebook group there) and hope it will be a great tool for everyone affected by WHSUS. Hope this helps you both!
Replies to "Hi Lisa and Nicole! My son also has White Sutton syndrome (he was actually one of..."
My son is 7 right now. He's had some serious health issues throughout his life (global delay, dysphagia, microcephaly, epilepsy...the list is long). However, he is by and large a joy for our family. Of late, our biggest struggles have been with aggressive behaviors and a persistent stomach condition that seems to plague a lot of these kids (he's been in the hospital 5 times in as many years for this).
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Hi @pixelauthor, and welcome to Connect. So amazing to have you join the conversation. With such a rare condition as WSS, it is so important to connect. Your Facebook group has been recommended before on Connect (https://connect.mayoclinic.org/discussion/anyone-with-keutel-syndrome/?pg=1#comment-80304).
I appreciate you bringing your knowledge and experience with your son to Connect as well.
How old is your son now? Can you paint us a picture of what daily life is like for you and your family? (Only as you are comfortable of course.)