Thalassemia....ain't no big thang

From the CDC:

Thalassemia is an inherited (i.e., passed from parents to children through genes) blood disorder caused when the body doesn’t make enough of a protein called hemoglobin, an important part of red blood cells.  When there isn’t enough hemoglobin, the body's red blood cells don’t function properly and they last shorter periods of time, so there are fewer healthy red blood cells traveling in the bloodstream. 

Red blood cells carry oxygen to all the cells of the body.  Oxygen is a sort of food that cells use to function.  When there are not enough healthy red blood cells, there is also not enough oxygen delivered to all the other cells of the body, which may cause a person to feel tired, weak or short of breath.  This is a condition called anemia. People with thalassemia may have mild or severe anemia.  Severe anemia can damage organs and lead to death.

 Sounds like scary stuff,  doesn't it?And potentially it can be very scary. But here in the US it is so very treatable. 

Belle has the most severe type of thalassemia, beta thalassemia major. As a result she goes every 3 weeks to Children's Hospital for a blood transfusion. Because of so many transfusions there is an unavoidable build up of iron in her body. That sounds weird doesn't it?  Someone with chronic anemia has too much iron in their body.  No matter how odd that sounds it is true. So Belle takes a daily medication to get rid of the excess iron. It is called Exjade. 

Every morning we crush up the plain white tablet and mix it with juice. Some days she drinks it down better than others. Her dad does a great job as cheerleader to get her to drink it. She is turning in to a daddy's girl. 

Belle's prognosis, if we follow her treatment plan, is very good. She can have a normal lifespan, grow up, marry and have biological children.  There is very little she can't do.  

So if you donate blood, thanks a whole lot. If you donate to children's, thanks. Because of you Belle and kids like her can live a normal life span.  

We were scared at first. But we've been scared before. I still remember the look on Matt's face when he found out about the twins!  But it turned out to be something that,with the help of the thalassemia community's knowledge and support of friends near and far, we can do. 

And any bother or inconvenience gets forgotten pretty quickly when I look at this face