Mattie J.T. Stepanek of Rockville, Md., was internationally known as the best-selling author of five books of poetry, as a peace advocate and as MDA’s National Goodwill Ambassador from 2002 through 2004.
Stepanek had dysautonomic mitochondrial myopathy, a genetic neuromuscular disease that impaired almost all of his body’s major functions, such as heart rate, breathing, blood pressure and digestion, and caused generalized muscle weakness. In his last few years, he used a power wheelchair, ventilator and supplemental oxygen, and had regular blood transfusions to keep going.
Stepanek’s mother, Jeni, 52, has the adult-onset form of the disease, and his three older siblings died of it in early childhood.
Perhaps because he witnessed death at an early age, Stepanek was acutely aware of the value of life. Precociously intelligent, he began writing poetry at age 3 to cope with the death of his brother, and continued to fill notebooks with poems, stories and observations. Poetry, he said, “is a way that you can inspire others while you’re expressing your true feelings.”
At an early age, Mattie developed his personal life philosophy: “Remember to play after every storm. You go through many hard things in life but if you are confident, you'll get through it. You always have to remember to celebrate because that’s what charges you up to get through another life storm.”
In 2001, a slim volume of his poetry, Heartsongs, was published by a small Virginia publisher, and Stepanek’s fame took off. Within weeks, his book shot to the top of the New York Times best-seller list, and he was featured in a variety of national media, including “The Oprah Winfrey Show,” “Good Morning America,” People magazine and CNN's “Larry King Live.” Four more books followed, including Journey Through Heartsongs, Hope Through Heartsongs, Celebrate Through Heartsongs and Loving Through Heartsongs (released in January 2003).
Stepanek died on June 22, 2004, in Washington, D.C., due to complications from his rare neuromuscular disease.