Lmastro,
I'm sorry to hear that your son has had so many problems. Another organization you might contact is the
Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC).
If you've been told that your son has an inherited bone marrow failure syndrome, have you been told which one? Each of those symptoms has multiple potential causes (e.g,
causes of high platelets) and a specific diagnosis is important in order to study the treatment choices.