Boy Who Overcame Illness To Write Poetry Books Dies At 13
By Michael W. Kahn
Associated Press Writer
Matthew J.T. Stepanek, a little boy who overcame a rare form of muscular dystrophy to write five books of poetry, died Tuesday. He was 13.
The Rockville, Md., boy known as Mattie died at Children's Hospital in the nation's capital, less than a month before his 14th birthday. He suffered from dysautonomic mitochondrial myopathy, a genetic neuromusclular disease which interrupts automatic functions including breathing and digestion.
He was sick at birth, but managed to survive. At the age of three he began writing and went on to become a phenomenon -- publishing five books of poetry, including "Heartsongs." He was the lyricist for the CD "Music Through Heartsongs." He appeared on shows including "Oprah" and "Larry King Live" as he endured medical needs including a ventilator and weekly blood transfusions.
"I feel very close to God, he's helped me a whole, whole lot," Mattie said in a 2001 interview with WRC-TV. "And I think that at every turn I should not only pray and do the right thing, but I should also appreciate the other little things that he gave us, like trees that reach up to heaven."
Mattie was a National Goodwill Ambassador for the Muscular Dystrophy Association from 2002 through 2004.
"Life threw its worst at him and he responded by seeing the good," said comedian and MDA chairman Jerry Lewis. "He was -- he is -- a shining star."
Mattie is survived by his mother, who earlier lost three other children to a rare form muscular dystrophy, and suffers from the disease herself.
© 2004 The Associated Press
