I was diagnosed with beta thal minor with major status in the mid 70's. At that time they told me that what I had was basically the same as sickle cell anemia, but the nationality origins were different. I know that your sons situation sounds serious, but just want to encourage you not to believe this disorder/disease is in control. I am 49 and still alive and happy.
Blessings to you and your family,
OldThalGal