Takes Five; Jeni Stepanek; Mother Knows Pain of Muscular Dystrophy

Summary

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Jeni Stepanek is a mother who has known loss that few can imagine. All four of her children have died from a rare form of muscular dystrophy. Her youngest son, Mattie, who passed away in June 2004 at the age of 13, served as the Muscular Dystrophy Association's national goodwill ambassador for several years. Mattie became known throughout the world for his prolific poetry, which was featured in the "Heartsongs" book series. He was in Milwaukee with his mother in 2003 during the 100th anniversary of Harley-Davidson, a company whose official charity is the Muscular Dystrophy Association. Stepanek, who also suffers from mitochondrial myopathy, the adult onset form of muscular dystrophy, plays an active role on association's board of directors and has received the organization's personal achievement award. She also is a faculty research associate at the University of Maryland, where she's nearing completion of a doctoral degree in early childhood special education and anticipatory grief. She was recently in Milwaukee to speak at the 2005 Black-n-Blue Ball, a biker-theme benefit for the association. She took five with Kathleen Arenz of the Journal Sentinel staff.

Q. How common is it for muscular dystrophy to affect so many members of the same immediate family?

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Takes Five; Jeni Stepanek; Mother Knows Pain of Muscular Dystrophy

A. There are certain types of MD that have a genetic component. The kind I have is very rare, highly genetic and highly fatal. I had four ch...

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