My name is Nadine I am from Ireland and my nephew travis has DMD, he is 7½, he was only diagnosed with DMD in January of this year. I felt like I was looking back at myself and all the same questions my family had. You will have a very busy year what with appointments, physio, occupational therapists and much much more. This will eventually slow down and you will be able to breath again. You will find the answers to all your questions yourself through the internet, these good people on this site & your doctors. Our GP had never dealt with MD either which is why travis was not diagnosed earlier. We knew there was something wrong but our Dr didn't see it. You are going to have a year full of ups and downs unfortunately but try & find out what mutation your son has so you will be able to look up the clinical trials for the specific mutation your son has. You will find out so much and be given a lot of hope but eventually that will slow down because you will be where we all are now, we are up to date on everything they are doing to try and treat/cure this disease. Now it is just a waiting game. Best of luck to you and your family.
I am very sorry to hear about Benjamin's diagnosis. You are in the hardest part right now and i know it may not seem like it, but life does go on, and eventually you will find your bearings again. Our son Sam was diagnosed almost four years ago - he just turned 7 this week and is doing very well. You are on the right track in considering cincinnati - it is not the only place to go, but Dr. Wong does an incredible job with our boys. One of our PPMD board members, Christine Piacentino, lives in Rochester and would be a great resource for you. Please feel free to contact me directly at firstname.lastname@example.org, or you can call me on my cell at 214-727-4892.
Just a little update,
I received a return phone call this evening from Dr. Wong's office. Ben has an appointment to be seen/evaluated by Dr. Wong & her team on March 3rd. It seems so very far away, and of course we were hoping for something much sooner.
The good new, Dr. Wong called and spoke to our pediatrician, and feels confident that with her guidance, he can have much of the preliminary testing done, and gave him instructions as to what specific tests to order, and what labs need to run the results. I guess with her in the "driver's seat", iI feel more comfortable with the wait. I am sure that if anything in these tests comes up different than expected, she will give further instructions, or maybe move his appointment up sooner.