The statistics are bleak. Even knowing the grim statistics which suggest that the average life expectancy of a child with thalassemia major in Guangxi is 15 years (and some statistics suggesting that 85% of patients will die before age 5, and that living beyond age 12 is exceptionally rare), we were unprepared to see what that reality looks like in the body of a little child. Seeing and knowing her story has made the horrific statistics all the more real and has strengthened our resolve to do all we can to change these statistics.

Kelsee Zhao is only 6 years old. Born with thalassemia major as the second child to her parents living in a rural village area, Kelsee never had a blood transfusion. The standard of care treatment for thalassemia major, a genetic anemia, is regular blood transfusions and chelation medications. Regular transfusions for a child with thalassemia major typically occur at intervals of every 21-28 days. Transfusions typically are designed to keep a childs’ total hemoglobin (a measure of the degree of anemia) above 9.0, with some physicians targeting a total hemoglobin of above 10.0. However, in the area where Kelsee lives, regular transfusions must be paid for prior to each treatment and this often meets or exceeds a family’s monthly income. This results in sporadic transfusion care, or, as in Kelsee’s situation, no transfusions at all.

By the time we learned of Kelsee’s situation, her little body was in a catastrophic anemic crisis. Her hemoglobin was slightly below 1.0. Her body was swollen and her face beyond recognition. Her heart and lungs were failing. Her blood was clotting abnormally and her liver and spleen were enlarged. Kelsee was dying of thalassemia major.

Fortunately for Kelsee, we were able to intervene and she survived. Yet, her story redefines the statistics from numbers to an actual child. Kelsee’s story makes the statistics real. Knowing her story has strengthened our resolve to change these statistics, actually, change the lives, of each child born with thalassemia major.

Further information on the statistics of life expectancy with thalassemia in Guangxi:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5430438/
https://onlinelibrary.wiley.com/doi/pdf/10.1002/pbc.23101,

Knowing hope, one life at a time