Boots on the ground...

Today, as I surfed Facebook, I saw family after family on their way to Nashville, TN for the 2017 MTM-CNM Family Conference, an event that occurs every other year. Each of these families has a family member that is affected by Myotubular Myopathy or Centronuclear Myopathy. Javad has x-linked Myotubular Myopathy and was diagnosed when he was nearly two. When he was first diagnosed, I felt so alone. Everything on the Internet (remember this was 13 years ago), said his likelihood of survival was slim. I cried...and cried. This was before Facebook, before many ways that we look at as natural ways to connect and communicate with others. At that time there were Yahoo groups and messenger. Somehow I found a group on Yahoo of parents (mostly moms) that had children affected by MTM. I would spend my nights chatting with other moms, sending a message then waiting at the computer for the response. Compared to today's technology it was almost torture but it was all we had. I bonded with thes