MYOTUBULAR MYOPATHY & CENTRONUCLEAR MYOPATHY

My beautiful son, Joseph, was born on May 29, 2007, and the doctors couldn't tell us what was wrong. We endured countless tests that returned with negative results. I was in such a deep despair not knowing what was wrong with my son. In April of 2008, my son underwent a muscle biopsy and we discovered he had mtm-cnm. The relief of knowing what was wrong was replaced by a deeper sense of despair after finding out how rare this disease is and there was no cure for it. In February of 2009, I stumbled across the MTMRG and began to network with Connie, Shannon and Sarah. After speaking with these wonderful ladies my despair lifted and I knew I had a purpose. I would become part of this family and actively participate in finding a cure for our precious angels. My wife and I dove into a fund raising effort to help raise money for this very important family conference happening in July in Houston. My wife and I registered and planned on taking Joseph and a caregiver. My precious angel was suddenly taken from us on February 28, 2009. My son taught me so many life lessons during his short life. My grief has been well documented on his blog, <a href="http://www.babyjoeyblog.com, " target="_blank" rel="nofollow">www.babyjoeyblog.com, </a>and Facebook. I just want to assure all the families who have children with this merciless disease that his death has only made my resolve to find a cure is now stronger than ever. My wife and I want to encourage as many families that are able to attend the conference to come. Through our support and care of each other we will beat this disease and see our precious angels running on earth as well as in heaven.