We learned about a year ago that Melaina has a disease called Nemaline Rod Myopathy. It causes severe muscle weakness and is usually fatal among infants. One reason we feel very fortunate today, 17 months later, is that Melaina is doing well and keeps improving but my family has a long road ahead.
During our early journey, I kept a video journal of our experiences with Melaina's illness. After a lot of careful consideration and conversations with my wife, I thought I would tell others about the journey my family has been through. I don't do it for attention, nor to get people to feel sorry for us. I do it because there are many positive messages in the story and I do it to help others learn more about Nemaline Rod Myopathy and the 39 other neuromuscular diseases the Muscular Dystrophy Association is trying to cure. These diseases are thieves that steal movement, steal time, and sometimes steal the futures of thousands of children. I also tell this story in appreciation for all the prayers and well wishes we received through what has been a very challenging time.