I'm glad but not glad to meet others that also have small children. I feel alone, we have a almost 4 yr. old, and a just turned 6 yr. old and 10 yr. old. We have been diagnosed since June 2014, and I believe that the end is very near. Speech is almost completely gone, he should not be eating at all, but still wants to try. Trying to use the gait belt for transfers has become very difficult for me to move him. His legs want to cape in and he is like a big 200 lb rag doll. I don't know what to do next.