Lakshmi Ava Desai, affectionately known as "Lady Luck", was born May 30th, 2008.  Lakshmi experienced several life-threatening complications from the very beginning of her life.  She was severely anemic meaning her blood was not carrying sufficient oxygen.  As a result, many of her organs including her kidneys had begun to shut down.  Her heart was having to work extra hard to compensate for the low level of oxygen in her blood.

Lakshmi fought through all of these challenges.  After one month in the NICU at California Pacific Medical Center, she was sent home with a seemingly clean bill of health.  Lakshmi continued to progress normally, laughing, smiling, playing and eating as infants her age are supposed to.

About a month after Lakshmi left CPMC, we moved from San Francisco to Boston.  She saw a pediatrician in Boston several times and still seemed healthy.  We had several follow-up tests scheduled at Boston Children’s Hospital for the beginning of September.

Labor Day weekend, 2008, Lakshmi didn’t seem like herself.  She wasn’t smiling as much as usual, her appetite had decreased and she was sleeping too much.  After several calls to the doctor, we decided to bring her to Boston Children’s Hospital.  Despite being alert and awake when we arrived, her condition quickly deteriorated.  After about ten hours in the hospital, Lakshmi passed away September 2, 2008, just three months after she was born.

       
The autopsy diagnosed Lakshmi with Diamond Blackfan Anemia (DBA), a very rare blood disorder where the body doesn’t produce red blood cells.  She was living off transfused blood from her time in the NICU in California, but these blood cells only had a three-month lifecycle and she wasn’t able to replenish these red blood cells on her own.  Although research on DBA has come a long way, there are still many unknowns.  Currently, there are several gene mutations identified in people with DBA.  Unfortunately, only 50% of DBA patients fall into this category.  The other 50%, including Lakshmi, have no known cause of the disease.  It could be a spontaneous mutation that occurred with her or it could be a genetic characteristic passed on from her parents.  Much research is still needed to get answers for the half of DBA patients who don’t know the root cause of their disease.  Please help us support research for Diamond Blackfan Anemia by donating to our team as we gear up to run 200 miles in a few more than 24 hours.