This weekend has been a rough one for us. When your child has as rare of a disease as Luke does, you try to connect with other parents whos child has this. We have become extremely involved with the Myotubular Myopathy Resource Group in raising funds to not only help support research, but to unite families together in a conference. Being on the planning commitee of the conference, I have been lucky to meet the Sanders family. This family had a child named Joey who was diagnosed with an autosomal recessive form of Myotubular Myopathy (a not as severe form). They have used all of their efforts to raise a large amount of money and used resources to help this conference come alive. They are the most positive and driven people. I am lucky to have met them.

This weekend their son Joey went to heaven to be with Jesus. This was extremely shocking to us. It hit me like a ton of bricks. I felt as if I was losing my own child. I can't tell you how much I hope and pray that we find a cure for this disease. So please take the time to love one another each and every day and never take a moment for granted. We love you baby Joey and we one day will meet you and all the other MTM boys on the ball field in heaven.