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I know that there isn't any true comparison, but I am going through sometime a tiny bit similar.
My daughter's grandmother has Parkinson Disease, and I am so scared to have to watch it.. In the past few weeks her symptoms are showing more than normal, and it makes me cry.  I know watching her and loosing her will be the hardest thing I have to go through in my life.  So I feel and share a little of your pain.. I know you have a ton of friends, but you do have a friend in me.  I know "I'm sorry" doesn't go very far, but I am.  I am sorry that you don't get to spend the time you deserve with your son.  I'm sorry for yours and his pain.  I wish we weren't helpless.  Thank you for writing so beautifully, and posting the cutest pictures I've seen!  I just imagine the softness of that belly skin.