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The 'Wait... What?' Moments When Parenting a Child With Muscular Dystrophy

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“I believe your son has a condition called facioscapulohumeral muscular dystrophy (FSHD). A blood test is required to confirm it.” With those words, my life’s focus would be forever changed.

These words were first spoken to me in the fall of 2011 when my son, Sam, was 6 years old. He was referred to a neurologist at the University of Arizona Medical Center after an orthodontist asked if Sam could raise his eyebrows. “Of course he can,” his father responded.

As it turns out, he could not. Wait… what? He was an active 6-year-old boy. Yeah, he got tired. Yeah, his smile was “odd.” And yes, his aunts and uncles thought he was a very serious child with little facial expression, but that was just Sam.

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