I'm so sorry you had to go thru so much to have your son's case diagnosed!! Sometimes I wonder if the medical world is clueless or what. I hope all is going well with your docs and everything he is doing for your adorable little boy. Have you signed up with Muscular Dystrophy Assn?
We just found out last October about our son. We were on summer vacation last year and poor Alexander kept falling down for no apparent reason while we were walking around. I took him to his Ped as soon as we got home. His ped diagnosed him with some other form of MD and sent us to Loma Linda Ped Neurology. They saw Duchenne. We were in shock and took him to Irvine to a specialist there, Dr Mozaffar confirmed the diagnosis & sent blood to Univ of Utah for DNA testing. He referred us to Dr.Kevin Flanigan who is now our specialist for DMD. We are still finding our way...still need to start PT, although I have selected where to go it's a matter of getting the paperwork around, and have started steriods recently.
My son, Alexander really needs to know others out there who are in his same boat, without seeing the more severe cases thru MDA camps!! Alexander is smart and really sensitive, he has already become upset at seeing other children in various states of decline so we see he is not ready for the MDA stuff. With things as they are I wanted to meet other parents too and provide a chance for these boys to get together for fun! I'm so glad you are considering coming out here - I hope it will be the start of a bonding process for us all.
You and I have not met before but I noticed you live near us, which is in Riverside. And, our son's are aprox the same age. My husband and I are having a small DMD get together at our home later this summer and would love it if you would consider joining us. The reason for this gathering specifically is because I thought the SoCal boys should meet each other. My son's diagnosis is recent so he hasn't connected with others with DMD yet. If they meet each other in person they might be able to connect with e-mails, ect. Anyway, that is the "excuse" for the party. Let me know if you are interested and I will provide the details.