For those who have followed us for a little while–you may know that our oldest son has sickle cell anemia. We have traveled a journey of 14 years with him fighting this disease on many levels. We recently learned of a…..MIRACLE. A miracle that is going to soon allow our son to live sickle cell free. WE KNOW IT.
Listen in below to learn more and I’ve also inserted a little blurb below from a sickle cell campaign we did a few years ago that gives a little more history and depth to our story.
From a Sickle Cell Campaign we did in support of our son a few years back….
October 20, 2001 our first born son, Asante Ma’at, was born. I remember how he looked, how cute he was, even how he smelled. Those first few weeks of life were some of the most joyful and frightening days of my life.
Not long after Asante was born my husband and I got a call from the hospital to let us know that Asante had sickle cell anemia (SS type). What did that mean? We had no idea. But, we do now.
Sickle Cell Anemia is a serious disease where the body makes sickle-shaped red blood cells. “Sickle-shaped” means that the red blood cells are shaped like a crescent. Sickle cells are stiff and sticky. They can block blood flow in the blood vessels of the limbs and organs. This has caused excruciating pain, serious infections, numerous hospital stays and organ damage for our son.
I remember when he was born and we were being educated about the disease. One of the first doctors we talked to said “10 years from now there will be major progress that will have been made in getting closer to a more widely available cure for sickle cell. I just know it.” At the time her words didn’t mean much to us. 10 years? I had an infant who was having pain crises that hurt so bad it would keep him up at night crying and screaming . As parents, not being able to take the pain away is one of the most difficult things we’ve ever had to endure in our lives.
As hard as it’s been on our entire family Asante is the one who’s really gone through. He is the strongest and wisest little boy I know. Most adults couldn’t endure what he’s endured up until this point. Excruciating pain crises that last for days on end, pneumonia after pneumonia, dangerous sickling in his lungs (acute chest syndrome), deterioration of his hips (avascular necrosis) to the point where he’s been ordered by the doctors to not run and jump anymore, blood transfusions, admissions to the ICU…
But, here we are–10 years later–and our little baby is now our 10 year old big boy and there IS a cure that is more widely available today. Yes, there IS a cure and he needs it. Asante needs a bone marrow transplant and as God is our witness we are going to do everything in our power to push forward until he is blessed with a transplant and his body is free of sickle cell!