What is Diamond Blackfan Anemia?
Dani suffers from Diamond Blackfan Anemia (DBA), also known as Pure Red Cell Aplasia. This is a rare blood disorder that is characterized by a failure in the production of red blood cells by the bone marrow. Red blood cells are in charge of transporting oxygen throughout the body, so they are essential for living.
Why the bone marrow transplant Dani needs cannot be performed in Costa Rica?
The first reason is that Dani’s family is not compatible with him, so they cannot donate their bone marrow to him. Second, in Costa Rica there is no bone marrow bank, so there are no bone marrows available for Dani. Third, in this country there is no experience in bone marrow transplantation in patients with Dani’s own characteristics. He has a rare disease and many years of receiving blood transfusions, with all the consequences that this entails, so that the protocol of bone marrow transplantation that Dani needs is different from the one that would be used to treat other diseases, and it is done only in a few hospitals in the USA. Cincinnati Children’s Hospital specializes in Diamond Blackfan Anemia, Dani’s disease.
Why is the cost so high?
Medical services in the USA usually have very high costs, especially when it comes to new-generation procedures, as in this case. The cost includes clinical studies and preparation by various medical specialists before transplantation, chemotherapy treatment, the transplant process itself, minimum hospitalization of two months in a special isolation unit, necessary blood transfusions, medications (some of them specially designed for Dani) and post-transplant care for 3 months in a special area for transplants at the Ronald McDonald’s House across from the hospital.
How much time do I have to make my donation?
Currently, Dani receives blood transfusions every 2 weeks to stay alive. With each transfusion, Dani’s number of antibodies and iron load also increases. To help decrease these, Dani is under a steroid treatment. This represents a more complicated scenario for transplantation, so once the steroid treatment ends (within the next few weeks), he will be medically ready to be transplanted. In addition, July 1st is the change of fiscal year in the USA, and after this date the cost of transplantation increases about 3%, so our expectation is to reach the goal before June 30th, 2017.
Is there any way to help Dani by donating money directly to a Cincinnati Children’s Hospital bank account?
Yes. If any company or foundation wants to make a large donation, they can contact us to make the donation directly to the Cincinnati Children’s Hospital on behalf of Dani.