Our Life

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.


One thought on “Our Life

  1. Hello

    I received notification of your blog via Google alert this morning and just wanted to say hello. I run a website – the Information Point for Centronuclear and Myotubular Myopathy (my father and I have dominant CNM). If you are interested in reading other peoples experiences or sharing your own, you can at http://centronuclear.org.uk/theinformationpoint/pages/share_a_story/share_a_story.html and http://centronuclear.org.uk/theinformationpoint/pages/newsletters/newsletters.html>

    I can also put you on touch with other families via the Information Point’s Facebook group. If your are interested, you can contact me via the website.


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