Wednesday, June 23, 2004

RIP Mattie Stepanek, 1990-2004

The NYTimes has the story here.

Mattie J. T. Stepanek, who published five volumes of poetry and became an advocate for people with muscular dystrophy, died yesterday in Washington. He was 13 and lived in Rockville, Md.

The cause was complications of the disease, the Muscular Dystrophy Association announced. Mattie was the association's national good-will ambassador from 2002 through 2004.

Mattie had dysautonomic mitochondrial myopathy, a genetic neuromuscular disease that impaired almost all of his body's major functions, like heart rate, breathing, blood pressure and digestion, and caused muscle weakness. His mother, Jeni Stepanek, 44, has the adult-onset form of the disease, and his three older siblings died of the disease in early childhood.

Mattie began writing poetry at 3 to cope with the death of a brother. In 2001, a small Virginia publisher issued a slim volume of his poems, called "Heartsongs." Within weeks, the book was on the New York Times best-seller list, and he soon appeared on Oprah Winfrey's talk show and on "Good Morning America."

Mattie wrote four other books: "Journey Through Heartsongs," "Hope Through Heartsongs," "Celebrate Through Heartsongs" and "Loving Through Heartsongs."
A true treasure to those fortunate to hear him talk, read his words, or feel his youthful enthusiasm.

God Bless his family.