At 6 weeks old, Pedro was diagnosed with Diamond Blackfan Anemia (DBA), a rare blood disorder where a person’s bone marrow doesn’t make red blood cells. As a result, the person becomes severely anemic.
There are currently only a few treatments available for DBA patients. Transfusion therapy and steroid therapy are the most common treatments. With transfusion therapy, the DBA patient must receive a blood transfusion every 3-5 weeks to live. Transfusions can cause iron overload, which can cause complications in other organs such as the liver, pancreas, and heart. With steroid therapy, the patient must take prescription corticosteroids in order to make the red blood cells. Only 40% of people respond to steroid therapy and there are other bad side effects with steroid treatment. The only other option is a bone marrow transplant, which is complicated and risky.
Pedro has been receiving transfusion therapy for 19 years.
We need a cure now!
Although research has advanced, there is still lots more to do. One of the hard things about finding a cure for DBA is that there are various gene mutations and each patient is different. With that said, a Dr. in Boston is doing a mouse study with the exact same mutation that Pedro has. This is exciting for Pedro in many ways.
1. This is a step closer to a cure and he can be a big part in it
2. He gets to name the mouse (boys)
3. He has never been on a plane or traveled anywhere
We are asking for your help in getting us to Boston so that Pedro can participate in this research and bring us a step closer to a cure for DBA. Your donation will help cover our travel costs and time off from work. Your donation will help advance the research needed to cure DBA.
Thank you in advance for making a donation that will get us to Boston where we can play a role in finding a cure for Diamond Blackfan Anemia.