I feel sorry for the young boys and the parents of those boys. Some of those boys will not be here when and if the FDA decide if they can have a medicine that can help them. The FDA ALWAYS look after the big drug companies first and here they have done it again. Perhaps the parents should put out a picture of their child with caption that says "Mr. President, if you had a son that looked like this would you help him?" Time to stop playing the political game of talking to senators and congressmen that have no power and go directly to the top. Only the president has the power to make the FDA do it's job.