Bradley's St. Louis appt. this month went well. The student doctor commented that Bradley seemed more like a child with Becker Muscular Dystrophy than Duchenne Muscular Dystrophy. For those that don't know, Becker MD is a milder version of DMD. The neurologist said we should not ignore the fact that the muscle biopsy done when Bradley was 3 years old indicated DMD. There are varying degrees of both DMD and BMD. I am hoping Bradley is borderline between the two. I doubt we will be doing any further testing....so only time will tell us the progression of the disease. I believe God is helping Bradley to do so much better. We take it day by day and trust the Lord to help us through whatever happens. He is in control and we have to trust him in whatever comes tomorrow.
I was also pleased that Dr. Neil, Bradley's neurologist was very supportive about us wanting to go to Cincinnati Children's Hospital Medical Center in June. He said he will be happy to work with us to have alternating appointments every 6 months between both locations. He also mentioned that he was there recently for a conference. The Physical Therapist was also supportive and mentioned she was just there this summer and was impressed with their DMD program there.
We are going to go back to St. Louis in February for the Utah Dystrophinopathy Research study Bradley is in. Through this study we were able to get a more advance gene test which told us Bradley's exact gene flaw which is a duplication of exon 2. The study is available at CCHMC as well but we feel we should go ahead and get another visit in at St. Louis since they have already been monitoring his progress there at Barnes Jewish