My son went to the dr Friday and as soon as he gets off the antibiotics hes on- two more weeks- he will be enrolled in an exciting study- one of his mutations ends in an X - dont know all the letters and numbers- its fairly rare in US but more common in Israel in the Jewish population. He will be on a medicine for two weeks ,off two and then a higher dose for two more. This is to see if his gene will begin to work. This of course is just a first step but still exciting. He will be hospitalized two nights after each of the rounds of medicine. Does anyone else know if they have this mutation -from what I understand this medicine will only work for this certain one. But hopefully we will learn stuff that will help everyone.