There are more than 450 children with thalassemia here in Yulin, Guangxi, China. I believe it because the last 3 days we have traveled all around this area meeting these children, hearing their stories, and learning all the difficulties that they face in treating thalassemia here.
Today we held a thalassemia outreach clinic. A large number of children and their families were there to learn from a thalassemia expert how to better manage treatment of their children.
Dr. Berdoukas provided an important presentation to show them the effects of minimal transfusions and chelation. He encouraged them to make sure the children receive proper care and showed them what proper treatment should look like. He empowered these parents to seek good care for their children so that they can grow up happily and healthfully.
And once the presentations were over, it was time for fun & consultations.
These families were thankful to get the information they need and want to follow it so that their children can be as healthy as possible.
But, there is a blood shortage. Not enough blood donations to keep up with the demand means that these children often wait, not weeks, but months for blood to be available for them. They are in fact, waitlisted, for blood. It seems the longest wait is for type O+ blood, which is the most common blood type in America and baffles me every time we’ve been told how long a child has been waiting for the call. Here it is a more rare blood type. We want to help but we know that the answers to this are not easy ones here.
Please be praying for this situation. Access to blood is vital to the health of these kids. We hope that the opening of a blood bank just for thalassemia children will help, but there is much work to be done to ensure these children have full access to the blood they need, just as our children in America do.
And please pray that my scratchy throat doesn’t grow into anything because tomorrow a few of us are headed to the hospital to donate blood before we leave. 😉
It was a good day today. We saw lots of smiles and it was good to see thal mamas and babas here in China continuing to build relationships like the ones I have with parents of children with thalassemia back home.
Knowledge will help these parents to be their children’s best advocate! Hopefully we did that today for these parents. Given how many I saw pulling out their phones to take pictures of the PowerPoints, I think we did!
What a blessing to be here in China providing support to the families of children just like my own. My prayer is that these families find the resources and support they need so that they never have to make the decisions that my sweet babies’ parents had to make.
Goodnight from China!
