Our Son's Special Needs

Our Son's Special Needs

"Special Needs" means a lot of different things to different people. I would like to take this time to share a little bit about our precious son. This is our third international adoption from China, special needs. And I can tell you each adoption process as well as each of my children's secondary needs or medical conditions are different. My son's primary NEED, is to have a FAMILY that he can call his own. A family that he can count on to tuck him in every night, and greet him every morning with a loving "Good morning Sunshine!" Siblings to play with and grow up with as his best friends. Parents to meet his every daily need as well as hold his hand through every medical procedure and course of treatment. Our son's secondary condition and medical need is treatment for Beta Thalassemia Major. Thalassemia is a genetic blood disorder. Thalassemia is not a single disorder but a group of related disorders that affect the body in similar ways. Hemoglobin is the oxygen carrying component of our red blood cells. It consists of two different proteins, alpha and beta. If the body does not produce enough of either of these proteins, the red blood cells will not form properly and cannot carry sufficient oxygen. The result is anemia that begins in early childhood and lasts throughout their life. This blood disorder is 1 in 200,000 in the US. Beta Thalassemia is found in people of Mediterranean descent, such as Italians and Greeks, and is also found in the Arabian Peninsula, Iran, Africa, Southeast Asia, southern China. There are three types of Beta Thalassemia that also range from mild to severe in their effect on the body. And our son has the severe form, Major or Cooley's Anemia. This means his body has a complete lack of beta protein in the hemoglobin causing life threatening anemia that requires regular blood transfusions and extensive lifelong medical care. Lifelong transfusions lead to iron-overload which must be treated with chelation therapy to prevent early death from organ failure. Many toddlers with Thalassemia are abandoned in China because their families cannot afford to give their child the medical care that they need to survive. These families do not want to give up their child, but fear it is the only chance for them to get medical care, and a chance to be internationally adopted by a family that has access to healthcare and can receive regular transfusions. The orphanages in China do their best to transfuse these children, but it is still not to the frequency that our standards of care in the US would recommend. There is a shortage of blood supply in China. It is nothing for individuals/families to wait 5-8 hours to see a Dr. in a hospital. The longer these children live in the orphanage and are inadequately transfused and not on chelation therapy drugs, their organs begin to suffer from iron overload and become damaged. Many will die by their teens or early twenties if not adopted. We are so fortunate to live in the US, and have the access to good healthcare that we do. In the US, this lifelong condition is manageable. Individuals can live a good quality of life if they are compliant with their treatment. 

This is our son, who happens to have Thalassemia! We embrace his medical condition and look forward to navigating and providing the best medical care for him. He will never have to be transfused again, ALONE. He will always have his Mommy or Daddy beside him holding his little hand. We are already gathering a team of medical professionals and specialists to give him the best comprehensive care, so he can live a productive and healthy life with our family. (I have included a cute little youtube video, that is just a great, simple explanation of what it's like living with Thalassemia from a child's perspective.)  

Thank you again for being a part of this journey of love, and helping us bring our son home! Your support means the world to us, and is helping give this child a chance at life.