I'm sorry to hear about your Godson. I'm always here for questions. We went to Hopkins when Mark was first diagnosed (almost 5 years ago). Then we went for a second opinion/consultation at CNMC in DC. We stuck with the DC group. Yup, so we drive 1 1/2 hours every 3 to 4 months to DC.
Dr. Crawford will that suggest that a muscle biopsy be done, I'm sure. This will determine the type of muscular dystrophy and the location of the mutation. Some kids have point mutations, other have deletion and duplications. The results of this test will provide the information his parents will need to know in order for them to understand what type of clinical trial he is a candidate for.
I love Havre de Grace. My husband is from here, me from Baltimore then moved to Forest Hill when I was 12 years-old.
Let me know what else I can do to help you, your Godson, and his parents.