My eight year old just got diagnosed with DMD last month. We thought that’s what it was and the genetic test confirmed two days before we went to Seattle for the super muscle clinic. We have not started any medication as of yet. The doctors wanted to give us a chance to research and see what we wanted to do as a plan of action. One of the doctors told us about a family who had a RUclips channel with DMD who had the gene transfer therapy. I searched until I found your channel and have been watching some videos. Great information. DMD does not run in my wife’s family so we were totally blindsided by the diagnosis and we have two older boys that do not have DMD. We live in Fairbanks, Alaska and there is no centers that treat DMD here. I believe I understood you saying it has been almost a year since the gene therapy for Mason. Have you seen any positive/negative results or concerns in this procedure? I have also been looking at the Exxon skipping. Thanks, Jackie
Thank you so much for your thoughtful video!
Sounds like a good alternative. Good luck
My eight year old just got diagnosed with DMD last month. We thought that’s what it was and the genetic test confirmed two days before we went to Seattle for the super muscle clinic. We have not started any medication as of yet. The doctors wanted to give us a chance to research and see what we wanted to do as a plan of action. One of the doctors told us about a family who had a RUclips channel with DMD who had the gene transfer therapy. I searched until I found your channel and have been watching some videos. Great information. DMD does not run in my wife’s family so we were totally blindsided by the diagnosis and we have two older boys that do not have DMD. We live in Fairbanks, Alaska and there is no centers that treat DMD here. I believe I understood you saying it has been almost a year since the gene therapy for Mason. Have you seen any positive/negative results or concerns in this procedure? I have also been looking at the Exxon skipping.
Thanks,
Jackie