Finally on Tuesday, the call came in that the neurologist had received the DNA test results. We were able to get in on Wednesday morning. 48 days after hearing the words "I think Deacon needs to be tested for Muscular Dystrophy" the results did confirm that our sweet boy has Duchennes Muscular Dystrophy. His is a deletion of Exome 19.
Right now he is too young for any clinical trials and there aren't any clinical trials being processed for his deletion. So we wait. We wait for him to turn 7. We wait for more trials to be developed and started.
We do have several things that we can do and are doing for him now to keep him strong. That is the goal is to keep him active and walking and as strong as he can be. Stretching, night splints, physical therapy and medicine will help us do this. He is such an active little guy that he will be his own physical therapy for a while. Climbing on the play equipment at school is a great way for him to keep his muscles going.
This will continue to be a place for me to journal and to get my emotions out. All we can do right now is pray that a cure will be found before it is too late for Deacon. We appreciate your prayers.