Jeni Stepanek is the mother of Mattie Stepanek, the New York Times best-selling author and humanitarian, who passed away in 2004 from Dysautonomic Mitochondrial Myopathy. Jeni lost three other children to that same neuromuscular disease and has the adult onset form herself. She holds a doctorate in early childhood special education and is an award-winning speaker, writer, and advocate. She lives in Rockville, Maryland.
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When her son, Mattie, was born with a rare disorder now known as Dysautonomic Mitochondrial Myopathy, Jeni Stepanek was advised to put her child in an institution and “let nature take its course.” Instead, she nurtured a boy who grew to become... SEE MORE