Fanconi Anemia is a rare genetic disease.  Sarah and Daniel both have this awful disease.  While this site is dedicated to conquering Elisa's cancer, we felt this site could also bring updates, education, and understanding to our little kids disease. 

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Fanconi Anemia is a genetic disease.  Both children were born with FA.  FA attacks in multiple ways.  The two major concerns are bone marrow failure, and cancer.  In addition to the FA, both children have a strain of Fanconi Anemia called BRCA-2.  BRCA-2 is most commonly known for being present in breast cancer, but in the case of Sarah and Daniel is makes their disease more serious.  Most FA kids have cancer by age 7.  Many kids usually have to go through a bone marrow transplant in their young lives.  Sadly, most kids don't make it into adulthood.  However, more patients are making to adulthood every year with medical and scientific advances. 

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Specifically regarding Sarah:

     Sarah is mostly healthy at this point.  Her blood counts look good overall, meaning her bone marrow doesn't appear to be near any need for a transplant.  She has a bone marrow biopsy performed every six months, although it can move to every three months if her counts look off.  This has happened once which scared us, but ultimately turned out to be nothing and moved back to every 6 months.  Unfortunately, Sarah has developed a brain tumor.  The good news is it is benign.  We have this checked frequently, and it is not growing or changing.  We pray this tumor just disappears, or at the very least remains passive.

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Specifically  regarding Daniel:

     Daniel is a bit more medically fragile than Sarah.  In addition to the main issues listed above, Daniel has a few other key concerns.  He has a failure to thrive, which means he's not growing much.  He had a feeding tube placed in his stomach which allows us to give him formula to help with his growth.  This formula is specifically designed to protect his one and only functioning kidney.  The kidney is diseased however, so we have to protect him with medicines.  Another issue is to protect his kidney and bladder from reflux, where urine goes back into his system.  In order to protect him, we have to catheterize him about every 3 hours, and at the end of the night inject antibacterial agent into his bladder to keep him safe.  Like his sister, he also has a bone marrow biopsy every six months, and is bone marrow is doing well with no signs of cancer.