The Boy Who's Stolen My Heart

He's not even two and a half, but he's stolen a huge piece of my heart. This little boy is near and dear to me, and he's gone through more pain than many will in in their lifetime. Meet Joshua. Or Musa (Pronounced "Moo-sey" which is Luganda for Moses - because he's wise for his years). He's an old man in a little boy's body. And he has the biggest smile that lights up his entire face and everyone around him.  

This precious little boy suffers from sickle cell disease. Sickle cell is a blood disorder where your red blood cells are actually shaped like sickles or crescents, hence the name. Normal red blood cells are soft and round and can squeeze through tiny blood tubes (vessels). Normally, red blood cells live for about 120 days before new ones replace them. People with sickle cell conditions make a different form of hemoglobin A called hemoglobin S (S stands for sickle). Red blood cells containing mostly hemoglobin S do not live as long as normal red blood cells (normally about 16 days). They also become stiff, distorted in shape and have difficulty passing through the body's small blood vessels. When sickle-shaped cells block small blood vessels, less blood can reach that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. This is what causes the complications of sickle cell disease. (SCDAA)

The Centers for Disease Control and Prevention estimates that 90,000 to 100,000 Americans are affected by sickle cell disease. About 2 million Americans have the sickle cell trait. The available data, compiled in the early 1970’s, estimates sixty six million people, 20% of the Ugandan population, are at a risk of having a child with sickle cell disease. It is estimated that 33,000 babies are born each year with the disease in Uganda, of whom 80% die before celebrating their fifth birthday. (Sickle Cell Association of Uganda). Sickle cell disease occurs more often among people from parts of the world where malaria is or was common. It is believed that people who carry the sickle cell trait are less likely to have severe forms of malaria. This means that they are less likely to die for malaria and live and procreate. If both parents have the sickle cell trait at each pregnancy, there is a 25% chance that the child will pick the trait from both parents. (Ministry of Health Resource Center)

  

People with sickle cell can go into a sickle cell crisis. Sickle cell crises can be caused by sickness or too much of anything. Too much excitement, too much sadness, too much stress, too much pain. With a child so young, it is hard to control the emotions felt so it is very easy to slip into a sickle cell crisis. Crisis symptoms include severe pain, chest pain and difficulty breathing, strokes, joint pain, arthritis, bone infarctions, blockage of blood flow to the spleen or liver, and severe infections. 

The pain for Joshua is mainly in his legs. He had one surgery a while ago to help with issues that he was having. Over Christmas, he started going into multiple crises. He was very very sick. And then just recently his leg started filling with pus (which they said would happen eventually after the surgery). It swelled so much that his skin started peeling off because of how extended it was. About two weeks ago he went and had to have surgery again. 

We were able to go visit Joshua right after he had the surgery. It was a relief to see him and his beautiful Mama, Harriet. Two days after surgery, Joshua was moving around and happier than he had been in months. Four days later, he was home. It's great having Joshua back and in better spirits then he has been in a long time. He's great until we have to change his bandages and clean his wounds. Then that quickly becomes the worst part of the day for everyone. Every day we have to remove the bandages, clean out the wounds (which are still draining pus) and re-bandage it. I have to hold down Joshua's little body as he cries and screams and tries to kick because of the extreme pain caused by doing this. As soon as we finish, he curls up in my arms and usually falls asleep. 

The Lord knows how much being here has challenged and grown me. It's certainly not easy having to hold down a little boy who is screaming in agony. But it has to be done. His wounds have to be cleaned so they can heal properly. God has given me the peace and the ability to be in situations like that, completely relying on him to get me through. And somehow, the fact that Joshua still wants me to hold him in my arms after having just held him down, shows me that he knows how much I love him and care about him. 

Joshua goes back to the doctors who performed the surgery on the 17th of this month. Prayers for healing for him would be greatly appreciated. Prayers for the wounds on his legs to heal. And prayers for complete healing from sickle cell so that he can go on to live a long, healthy life. I love this little boy so much. Him, his Mama, and his family. He's definitely stolen a piece of my heart.