We wanted to explore all options in order to give our daughter the best course of treatment. The most highly recommended option is a full match bone marrow transplant, however after checking the registry Amaya had no full matches.
Gene therapy was also presented as an option however currently you must be at least 12 years old and Amaya was 8 at the time of our consultation.
Although we were discouraged by her medical providers because of the risks involved for us the risk were worth it. We couldn't imagine a lifetime of going in out of the hospital, the constant pain that would come out of nowhere and the steady progression of her condition.