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.
5 comments:
I have been so very sad this weekend with the news of Abigails passing. It was also mentioned that another little one with Thal whose parents were watiing also died this past week. This is just breaking my heart. I had no idea thal kids had such a hard time in China. It is so managable here in the US that you just assume the kids there are in the same position-- but they are not. I cant belive your statistic that 80% die by 5 and no one left at 12. That is horrific and sobering. It puts things in a new light about how desperatly we need to get these little Thal kids out of China where their condition can easily be managed. Thanks for posting those stats. They are heartbreaking.
This is just heartbreaking. Thank you for sharing Tracy.
Please let your friends know there are some strangers out here on the 'net who are hurting for them... The news must have been an absolutely devastating shock.
Unfortunately, it's not just thal kids who aren't receiving proper medical care; even relatively simple diseases can go untreated to the bitter end. While we were swimming at the White Swan in 2010, my sister struck up a conversation with a couple who were there with their just-adopted daughter. They told her they had actually been in the process of adopting twins, but one of the girls got an infection... which was left untreated... which grew worse... and remained untreated until the poor child died not too long before they had TA (but long after they had begun thinking of her as their daughter). Even worse, they were told something that amounted to, "Sorry, but if you really want twins, we can give you a different set of girls when you get here." I'm not even a parent myself, but I simply cannot wrap my mind around the idea of a child being a throwaway object.
Please give E a huge hug for us. We are sooo lucky that she is in our lives and had parents who (unfortunately) know the horrors of this disease and rescued her in time from such poor medical care. We cannot even begin to think about how much love we have for her (fom the day we saw her picture). Adoptive parents have no less love than birth parents - if not more. Those poor parents - to have to grieve the death of their child that they could not hold in their arms. Sweet sweet E - we love you. T&E - our hearts are with you feeling the intense pain of that family. We love you and will pray for that family. We hear about poor E's scarred veins and cry, but realize she is so lucky to have you as her parents and Chilren's Hospital. Love you all.
Hugs for you guys too. I cannot imagine the pain the family is feeling with the loss of their daughter. Being so close to finally holding her and then losing her is heartbreaking. Give E even bigger hugs knowing how special it is that she made it home to her forever family.
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