Thanks for the kind words everyone.
Finding out your child has been diagnosed with a disease and for that disease to be known to probably kill its victims sends you off the edge emotionally but now we have some hope and an idea to keep him alive and we are determined to carry that out whether illegal or not.
What makes it a little exciting is we may be able to help others in the same situation but perhaps a little early for that yet.
A little positive side effect of all this is my wife and I now consume my home made meds which has helped us sleep again and sleep well. I would like to add that I was a heavy drinker prior to taking pot but now I will go a whole week without a drink and feel much better for it.
As I said in the beginning we have won a battle but we are yet to win the war.