The Facebook group is called CMTC-OVM, Van Lohuizen syndrome. There are a lot of really involved families that are there regularly for advice. If you join that group I can personal message you my e-mail for Jessica. Becca's leg looks different depending on the moment. I just spoke to a child development class last week about our experiences and I showed them pictures that were taken over a group of minutes and they could see differences in the pictures. Becca has done amazingly well considering all obstacles that she has faced and all the support I initially got here (this is where I started my journey) and from all my CMTC family on FB has inspired me to be of whatever help I can be to other families.