My husband and I are proud parents to two wonderful girls and an unbelievably awesome little boy. Our son, Benjamin, was delivered at 37 weeks gestation weighing 5 lbs. 8 oz. on February 16th, 2012. Immediately after delivery, Benjamin showed signs of respiratory distress and was transferred to the NICU. He was initially diagnosed with Myotublar Myopathy (MTM), but recently, more specific tests diagnosed Benjamin with Centronuclear Myopathy-DNM2. After 3 long months in the NICU, he was discharged home with a trach, ventilator, and feeding tube. This is our life and our journey.