Wondering if there are any parents out there looking for other parents of children diagnosed with this disease? My son was diagnosed several months ago after two years of seeing doctor after doctor, tests, and even surgery thinking that nerve compresion was the cause of his left hand wasting away. His right hand has now started showing signs of atrophy. He is a very active athletic 18-year-old who was planning on playing hockey in college but has now had to give up all activities and even changed colleges due to not being able to play hockey. I want to be a positive support system for him and need help from others going through a similar situation. The doctors have told him to wear a soft collar neck brace 24x7 and do not activities that cause flexing of the neck. I was so happy to find this forum. Please let me know if there are other parents out there looking for support/info.