I am actually located in Utah. Where are you located at? My baby is 12 months as well. He just started sitting unassisted this week. However it is only for maybe a couple of minutes. He is no where close to crawling or walking as well. Our geneticist is looking at him having MPPH with MCM as well. However he does not have any capillary malformations. He also has not had hydrocephalus, just very large ventricles. My son currently sees a physical therapist twice a month, an occupational therapist, as well as a developmental specialist. He also see's a neurologist as well as orthopedic surgeon. I appreciate your link the the facebook group. I will try that and see if I can get some more help and answers as well.