As the doctors continued their explanation of the diagnosis, I sat staring out a long, narrow window in the exam room watching freezing drizzle roll down the glass. I knew they were talking about my son, but their calculated words and sentences made it seem otherwise. How could this be about my son? The boy I could hear laughing and playing. The same boy who just minutes ago whispered to me asking if we would still have time to stop at Arby’s for supper. But somehow, from that moment to now, I felt like I had stepped outside of my body and was watching this unfold as some kind of bystander.
She went on to say that this was a very rare and complicated syndrome. They didn’t have much information about SIOD but at this time there were approximately 25 reported cases in the world. Often characterized by hyperpig-mented macules (resembles freckles), SIOD typically affects multiple areas of the body, which include but not limited to, slow to no growth, kidney disease, vascular disease, and joint dysfunction. As with the kidney disease, SIOD was progressive. So not only would Michael eventually require a kidney transplant, he would also need a wheelchair for mobility because the joints in his body would progressively degenerate leaving him unable to walk. Making sure I had complete eye contact with her now she paused before she shared the fact that life expectancy for children with SIOD was somewhere between age ten and thirteen. Michael was seven. It was at that moment that the freezing drizzle from the window seemed to penetrate my heart and I knew I wasn’t a bystander any more. It was a defining moment for what I now call Be the Change.