Welcome @suanne90 How frighting this must be for you and your little girl. This seems to be a rare autoimmune disease and I agree with @katgob in her earlier reply that seeking care at a larger research or teaching hospital for a second opinion might be a good decision. If you’re interested in Mayo Clinic, here is a link to request an appointment. http://mayocl.in/1mtmR63

To help avoid more transfusions, it sounds like your little girl’s doctors have suggested hydroxyurea. This medication has been around for decades and used to treat different types of blood conditions. We have many members in our forum who have been on the drug for years. You can find these discussion by typing in HU or Hydroxyurea in the search bar above.
However, just so you know, most of the members are much older than 8 years of age and the experiences they’re sharing aren’t necessarily relevant to your daughter’s case.
I’m not a doctor but I’ve had a very serious form of leukemia that required treatment and of course, some meds I was hesitant to take. However they worked. I know you’re concerned about giving the med to your daughter but it it helps her avoid more transfusions, it would be worth trying the meds. She can always stop if there is a side effect. The doctors may want to start with a lower amount and then increase over time.

For children with sickle cell anemia or Thalassemia bone marrow transplants have been very successful for potentially curing these diseases. Has a bone marrow transplant been suggested?