At the intersection of writing and life with the author of the Cameron Ballack mysteries

Saturday, January 25, 2014

At the Ocean of Healing, Waiting On a Ship

Instead of reading what I have to say today, I'd like you to experience the wonder of a major breakthrough. For nearly our entire married life, Christy and I have dealt with the reality of the neuromuscular disorder known as X-linked myotubular myopathy. Our sixteen-year old Joshua has known its affliction his whole life, now bound to a wheelchair to get around and prone to respiratory illnesses. Twelve-year old Lindsay may one day have to be tested to determine if she is a carrier of the myotublarin-deficient gene of MTM as Christy is. And our sweet 19-month old son Jordan bore the disease during his short life, which ended suddenly and peacefully in his crib over five years ago.

Yet despite that grim reality, one in which it is rare for an MTM boy to live into double digits, our afflicted boys and their parents are getting closer and closer to the unthinkable. Collaborative researchers--with a passion for achieving the unprecedented--are making progress on gene replacement therapy that can bring about a breakthrough for treatment and possibly a cure! Having succeeded with mice, they have found overwhelmingly positive results in GRT-treated dogs…progress that both staggers the mind and gladdens the heart. 

We still have to cross the sea that stands between us and a cure, but we have traveled so far already. And now we are at the harbor, facing the ocean of healing, waiting on a ship.

Watch the video here. And once you've done that, hope and pray with us.

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