He sat on my little bench for patients and just smiled. I asked why he was here, and his dad and uncles explained that they are from a remote area of PNG and that he had been having difficulty walking up hills and climbing steps for a while. They said he had been to other hospitals, but got no help.
I turned from his dad and uncles to the 11yo in front of me, Emmanuel. I asked him questions, and despite being from the bush of PNG, he answered in perfect Pidgin and very respectfully. The more I talked to him and heard his story, the more my heart got attached to him. I examined him and found out he had profound weakness in his upper arms and legs. When asked to sit on the lower step of my exam table, he just fell onto it because he didn't have any strength. When I asked him to stand from a sitting position, he couldn't without turning and using his hands to get up. He was able to walk without a limp, but couldn't race me down the hall. The more I examined him, the more my heart broke fearing his diagnosis wasn't something I could change.
There wasn't much blood work that I could do here to make a diagnosis, but what I could do confirmed my fears that he had muscular dystrophy (MD). MD is a genetic disorder causing weakness of leg and arm muscles eventually requiring a wheelchair and then leading to death in early 20s from heart failure or respiratory failure. I put him on steroids, hoping it would provide some relief, but despite wanting to be able to find a way to heal this kid, I wasn't hopeful that I we had anything that could reverse his illness. After seeing him, I read more about MD and was more discouraged because there really isn't anything we can do other than steroids.
2 weeks later, Emmanuel and his dad returned, Emmanuel with a huge smile on his face. He said he was better, he was now able to walk a little bit up hill, and didn't feel so weak. His face was really glowing as he told me he was better, and it wasn't just his face, but his dad's too. Mine did as well, but inside I was struggling because I knew this temporary improvement was only temporary, and that he would get weaker and weaker and would die at a young age.
I see lots of patients that are going to die, and many of them can't begin to grasp that their life isn't going to continue. For many, they only understand that they are very sick, and that we are going to try and help, but it isn't going to finish their illness. But, with a heavy heart, I knew for Emmanuel, I needed to tell him what the next few years would look like.
As I started to tell him about his disease and the prognosis for it, he would stop me to translate for his dad, who didn't know Pidgin. I told him how his legs were going to get weaker and how he was probably going to need a wheelchair as he got older. He translated this for his dad. Then I told him that his disease makes his muscles so weak, that he will die probably before he is an adult. He couldn't translate this, he looked down, then up at me, with a tear in his eyes.
Tears came to my eyes too as I saw this 11 year old, very bright, well mannered, fun loving kid who loves the Lord, understand that he is going to die in a number of years, and I can't change that as his doctor. This is the part of medicine that I hate. I went into medicine years ago wanting to try and stop people from dying, because I knew the pain I felt when my mom died years ago and I didn't want others to have to go through that, if possible.
Thankfully, medicine isn't the only hope that we have in this life. The boy's name is Emmanuel - God with us.. God sent Christ who lived amongst us, who walked this ground, who had struggles like we do, who was tempted like we are, who saw death and life and grieved and rejoiced like we do. Christ not only saw these things, but He lived them too. He himself suffered, He himself died a very painful death on the cross for all of us. He gave up his life so that we might have life.
As I prayed for Emmanuel and his dad, I thought of 2 Cor 4:17-18 "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
I wish Emmanuel's temporal life could be longer and that he didn't have to suffer, as he will as his body fails him. But despite that, I know that he has an eternal life that will last forever, with a body that won't fail him. I know that God will be with Emmanuel as much now as ever, watching after him, caring for him, comforting him in these days. Please pray for Emmanuel to know God's love more and more each day.