I am sorry about your son. This disease can be fatal to young boys. Your daughters are a different topic. I would have them all tested as they oget lder. My daughters do not want to be tested.
My children, 30 and 25 showed no interest in being tested. If you are considering having children, you need to know if you are positive for AMN. If so, they have to do invitro fertilization for you to have a normal child.
The long term affects of AMN are not so severe for girls.
My mom had AMN, and this did not affect her adversly.
She raised four young boys from young ages to adult-hood. She had indefatigable energy. She never tired. She was fun to be with, had a great sense of humor. Mom lived fifty years without father, a great general surgeon who died from pancreatic cancer at age 39.
I would talk to others on this board, or consult your Dr. and see if he knows of any support groups.
Don't let the illness scare you. Knowledge is always better than ignorance. God bless you. Mark.