hello Mickey,
I also have a sever type of CDA , they are not sure which type i have , as i have all the know symptoms and signs of all the types.
I am 22 years old , female , living in Australia.
I was diagnosed a few months i believe after i was born , i have been transfusion dependent since i was born.
Where do you live? At what hospital was your son diagnosed ?
i am very interested in your sons story and perhaps getting in contact with you and your specialists in the states .
thankyou
kind regards
lillie