Things have progressed since November 2008. Jon has decided to continue in the PTC trial and is particpating in Muscle MRI trial at the University of Gainsville. When I asked are you sure, he said "Mom - if I am able to particpate in these trials, I think I should": "Not all the boys can." So with Jon's determination and Dad's help Jon remains an active participant in these trials. My husband and son continue to make trips to University of Utah for the PTC trial and to Gainsville. The trips from Rochester NY to Utah usually are three day trips and occur every 12 weeks. Two days are devoted to travel to UT and back. The other day is devoted to the testing protocol while in UT.
We have had some issues with the high school, but they are pretty understanding. We have now become scheduling experts to assure that we maintain compliance with NY state regents exam requirements and high school requirements. But Jon appears not to mind the extra work and most of his teachers are supportive. In the end, we have decided to stay on path we started on.
As I said previously, my hopes are:
1) This trial will be successful.
2) Reasearchers and clincians will able to determine a protocal for all boys with duchenne, ambulatory or not.
3) This trial will pave the way for future duchenne drug trials for all boys with duchenne not matter what their mutation is.