She can live with this. Please do not wait until you or your child has leukemia if you hope to attempt a bone marrow transplant. We waited because we saw no positive alternative. No one had survived the kind of transplant facing Kirsten. But this is no longer true.
Leukemic relapse following transplantation is a very real possibility.
Eliminating AML is extremely difficult, especially in FA patients who cannot easily tolerate toxic chemotherapies. Please discuss this advice with your physician.