These adorable baby boys both have transfusion dependent thalassemia and are orphans. It was not too long ago when orphans with this diagnosis did not survive. We have held some of those sweet babies who did not get a chance.
In our last few years of working with orphanages one thing became clear. A consistent program for children with thalassemia was necessary. Some orphanages seemed to be able to provide more optimal care and transfusions. Others did not. When a child with transfusion dependent thalassemia is not transfused, the anemia can become critical and the child is at risk of death. Therefore, children with transfusion dependent thalassemia require regular access to red blood cell transfusions for their survival. Because of the health care system in China, orphanages need to pay prior to any medical care, including transfusions. There is not health insurance which covers the cost of this medical procedure. Some orphanages have the ability to pay for transfusions, others do not, and yet others have the ability to pay on an irregular basis or only when the child’s anemia reaches critical level.
Our goal is to ensure that every orphan with transfusion dependent thalassemia receives the proper care that is deserved in order to both survive and thrive. We believe that this is possible to achieve within the province, so that orphans can remain in the communities where they were born. Our hope is to use a palliative care model to ensure this. Palliative care simply means focusing on providing relief from symptoms and stress of serious, life threatening illness (according to the Leukemia and Lymphoma Society). It is an added level of support to provide quality of life. For orphans with transfusion dependent thalassemia, we intend to provide regular transfusions and enable foster care living to achieve an improvement of quality of life. The orphan is able to receive the ongoing care of a foster parent during any medical procedures such as transfusions, which require hospital admissions and a caregiver’s presence.
Little Nick (top photos above) turned 1 year old in September and little Ian will turn 3 years old in February. Both have transfusion dependent thalassemia. Their orphanage would like to partner with Knowing Hope in order to provide palliative care for both of these beautiful boys. We will be receiving regular updates on them, as well as lab information about their transfusions. We are hopeful that these two orphans will no longer fall into the critical range (HgB below 6) in order to receive transfusions!
The cost of palliative care is $50. USD/month for each child. This cost enables the child to receive specialized foster care with a foster family who is committed to caring for a child requiring hospitalization for transfusion care. We are hopeful that this model can be replicated at other orphanages within the province so that the best care possible will be received by all of the orphans with transfusion dependent thalassemia. Would you please help us to achieve this goal?
Knowing Hope, one life at a time.
