I am so sorry to see what you are going through. Alma, you are definitely not alone. I too have been left in the dark with inadequate help and support from local doctors and inexperienced MDA staff. I live in Palm Springs, Ca,. about 2 hours from you. My son is only 8, but I would love to talk with you or your husband and see if I can help you. I have had to educate myself in order to figure out how to handle my situation. There are other who may help at my page on facebook...LIVING WITH DUCHENNES MUSCULAR DYSTROPHY. It is shameful to face this alone..Please Visit..Mark Perrotte
PPMD has a genetic counselor with 15 years of clinical experience on staff who can help you sort out the questions you have about your son's diagnosis. Her name is Ann Martin, and you reach out to her via email at Ann@parentprojectmd.org
If you or your family have any other questions please do not hesitate to contact PPMD at info@ParentProjectMD.org or 800-714-5437.