Yesterday we heard some very sad news. A family waiting on TA found out that their child died. For those of you who don't know, waiting on TA is the very end of an extremely emotional, trying long haul. That is not to say if losing your child at Day 2 it would be any less horrific than losing your child at Day 102, but it makes it even worse.
Their child had thalassemia, and was from the same province, the same orphanage as E. She had the same surname as our E.
By the time we were waiting on TA, E wasn't simply a sparkle in our eyes. She was real, our daughter. She had a name, she had a room in our house, she had toys. Her pictures were everywhere, she had this blog in her honor. She had outfits picked out and lots and lots of dreams for her life and future with us.
Needless to say, after lots of quiet, private tears, we hugged our E extra tight today, telling her how much we love her over and over again. She got an extra cookie, and we didn't balk at changing her Elmo video an extra 7 times.
I don't know what took this poor little girl from her parents, making her an angel much too soon. I do know that there is a blood shortage in China. I also know that even for children who do receive adequate transfusion therapy, they are NOT receiving appropriate chelation. Oral chelators are not available, and subcutaneous chelation is not used correctly.
Before we adopted E, I read a study of children with thalassemia in Guangxi Autonomous Region. While this study was small, it left me in shock. By the sweet age of 5, 80% of the children with thalassemia major had died. In this one study, by the age of 12, there were no children left.
Tonight, when E climbs into my bed, I will hug her extra close, and breathe "Wo Ai Ni" a thousand times into her ear until she drifts off to sleep.
Our thoughts our with the family who lost their sweet daughter with thalassemia much, much too soon.