I'm sorry to hear about your grandson, when was he diagnosed? I obviously don't remember what it was like when I was diagnosed as a baby, but I imagine it can be quite stressful and difficult for a family. I personally haven't met anyone else yet with CDA1. I have to admit, it's not easy living with this disorder, and I have had to learn about it as I go...so I would love to share all of the experiences and knowledge that I have in chance that I might be able to help. I work as a nurse, but even with my medical background, it is hard to understand everything that it means to have CDA. I don't know if you have done much research, but it is also difficult to find many quality studies.
Why don't you send me an email and I'll tell you more about myself. My personal email is: firstname.lastname@example.org. Take care,