#TBT: Remembering Mattie Stepanek

Wendy Henderson avatar

by Wendy Henderson |

Share this article:

Share article via email

Mattie Stepanek’s story is well-known in the MD community. Mattie was the youngest of four children, all of whom died in childhood from complications due to the genetic neuromuscular disorder, dysautonomic mitochondrial myopathy.

MORE: Musclar dystrophy quote: Mattie Stepanek

Mattie touched the hearts of millions of Americans and was a regular guest on shows like Larry King Live, Good Morning America and The Oprah Winfrey Show. He was an award-winning poet and an advocate for peace whose hero was President Jimmy Carter.

His mom, Jeni, was diagnosed with mitochondrial disease in 1992, after the birth of her four children and had unknowingly passed it on. Her eldest children — Jamie, Katie and Stevie — all died very young, and Mattie died shortly before his 14th birthday in 2004.

In this video from EWTN, Jeni discusses the book she wrote about her son Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs and Mattie’s life as a messenger of peace and love. It also features footage of Mattie reciting some of his poetry.

Jeni is the founder of the Mattie Stepanek Foundation which runs peace programs aimed at adults, children and teenagers.

MORE: Inspirational young people with muscular dystrophy: Hayleigh Barclay

Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Forums CTA