You need to have a pediatric neurologist, physical therapist, occupational therapist, orthopedic physician, clinical nurse specialist, psychiatrist/psychologist, dietician, care coordinator, social worker, and genetic counselor. At later stages, a pulmonologist and a cardiologist. This is the team I work with to improve the quality of life in a child. It is imperative that you surround yourself with the best. You may, if not already, get referred to a social worker to get things in place. You will probably require adjustments to the home, etc. You must get all this in place. In Edinburgh, where I trained, we all work as a team in the children’s hospital to make life easier for the parents and the child. I also would encourage you to get in touch with a group of like-minded parents and join in the research of this disease. Though it’s rare affecting boys more than girls, there are substantial amounts of parents who you should get in touch with to help support you also. I wish you all blessings for the future and it will be bright. I have had some of my children go on to be married and have degreed education.