Battling Illnesses

Words of Courage

UPDATED 01/14/2002 at 01:00 AM EST Originally published 01/14/2002 at 01:00 AM EST

It wasn't the first time Jeni Stepanek had been told her son Mattie would die within days. As he lay in a coma in a Washington, D.C., hospital earlier this year, Jeni whispered a pledge: One day his poetry would be published. Somehow Mattie, who suffers from a rare form of muscular dystrophy, defied the odds and rallied. Says his doctor, Robert Fink: "He does things that aren't in the medical books."

Or the annals of publishing. Released last year by a small press, Mattie's two poetry collections, Heartsongs and Journey Through Heartsongs, have together sold 500,000 copies, turning the 11-year-old into one of the youngest literary sensations on record and in December earning him a three-book deal with Hyperion. The poems—plaintive reflections on spirituality and mortality—represent "my inner beauty," says Mattie, who started crafting verse before he could read. "When I was little, I'd say, 'Mom, write this down, please,' " he says.

Mattie inherited dysautonomic mitochondrial myopathy from Jeni, now 42 and studying for a doctorate in special ed at the University of Maryland. Although she was unaware that she had the disease until 1992, it has since left her disabled and will eventually kill her—as it did her three other children, all of whom died before age 4. (She and husband Gregory, 48, split five years ago.) The prognosis for Mat-tie, whose mother homeschools him in Upper Marlboro, Md., is unknown. He could live "two years or 50," says Fink. But Mattie has no doubt about his ability to endure. "I can take it," he says. "The poetry keeps me going."

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