Information and involvement of medical specialists and nursing is very important for parents and patient.
However, because the condition is not as well known, as a parent you must show initiative and not passively wait and see. Imagine being richly informed about the condition and treatment options to help. Moreover, you can then also be more informed on choices of treatment options and not have expectations of unrealistic treatments that slow down or impede the process of acceptance. This, in turn, has an adverse effect on your emotional state. You should also check whether you have any intervention for yourself or for the environment.
