Benjamin’s story

benjamin2Following seven weeks of preterm labor, Benjamin was born at 37 weeks on May 2, 2002. I felt that something was wrong since he never latched on while nursing, did not seem to suck or swallow, and did not seem to have appropriate reflexes. I was reassured that he was just a “sleepy baby,” and had passed all his examinations. One day later, while still in the hospital he suffered a cardiac arrest in my arms. Continue reading Benjamin’s story


  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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