Good morning, @suanne90 I wanted to check in with you to see how your little girl is doing and if she’s started the treatments with hydroxyurea? As I mentioned before, this is a very useful medication with a good track record for helping with some blood diseases. This could be worth a try to see if it helps your daughter so that she doesn’t have to rely on so many transfusions. From experience I know these aren’t a long term solution without side effects.

I also think it may be worth a visit to a larger teaching/research hospitals such as Mayo Clinic, Cleveland Clinic, or the numerous other reputable medical facilities around the country for a 2nd opinion. Just because your daughter doesn’t have siblings or other family members for a donor shouldn’t rule out the possibility of a stem cell transplant from an unrelated donor or umbilical cord blood, which is rich in stem cells and has been highly effective in curing blood disorders such as sickle cell anemia.

Here is the link again to Mayo Clinic to request an appointment. http://mayocl.in/1mtmR63
There are clinics in Rochester, MN Phoenix, AZ and Jacksonville, FL
You don’t need a referral for Mayo Clinic but it may help to have your daughter’s doctor help with the referral.
Is traveling out of state an option for you?