This story first appeared in the Information Point newsletter Our World in 2013, after an email arrived out of the blue. It told a touching tale of a chid born with myotubular myopathy and a sunflower. Thank you Emma for taking the time to write, your kind words and for sharing lovely story with the world.
After trying for some time, last July, my husband and I found out I was pregnant. Earlier the same year my husband and I had some stumps ground out of our lawn leaving a few substantial piles of dirt in the yard. In one of the piles a sunflower grew – seeming to come from nowhere. We enjoyed the sunflower all summer and into the fall.
When our precious Conrad was born he was not breathing and was floppy. Long story short, after genetic testing we learned that Conrad had myotubular myopathy.
In my frantic search for information about Conrad’s condition, I came across the Information Point and read about the Sunflower Project. In that moment I knew that our mysterious sunflower was God’s way of telling us that He already knew what Conrad had and that he was preparing the way for Conrad’s life even while he was being knit together in my womb. Even when it seems that nothing is fair and the world does not make sense, God is in control and He has a plan for our darling little boy.
I am learning already that boys with MTM and the families who love them are very special people. Thank you so very much for all the work you have done to raise awareness about centronuclear and myotubular myopathy and for being here when I and my family needed you.