Poet and Peacemaker Mattie Stepanek Dies

Facing the Future

Every journey begins
With but a small step.
And every day is a chance
For a new, small step
In the right direction.
Just follow your Heartsong.

by Mattie Stepanek

Mattie suffered from a hereditary disease called dysautonomic mitochondrial myopathy. It is a rare form of muscular dystrophy that had already claimed the lives of his three older siblings (Mattie's mother, Jeni also suffers the same disease.) Mattie needed to take a portable oxygen tank on wheels with him wherever he went. During the summer he was confined to a bed in the intensive care unit of a children's hospital. Mattie was only able to move about on his motorized wheelchair. Even though he had been facing a terminal illness for the last six years, Mattie had never seen his condition as an obstacle between him and his goals.
-- My Hero

Teen's Advocacy, Poetry Touched Many Hearts

Mattie Stepanek : 1990-2004 "Remember to play after every storm."

Matthew Joseph Thaddeus Stepanek, 13, the cheerful, bespectacled child poet who charmed Oprah and sold more than 500,000 books of dreamy verse, died yesterday at Children's Hospital in Washington. He had a rare form of muscular dystrophy that affected his breathing, digestion and heart rate.

Mattie began reciting poems at 3, before he could write. His mother, Jeni Stepanek, who has the adult-onset form of the disease and who lost her three older children to it, took notes.

He told Larry King in February 2003 that he wrote almost every day. "How my mom describes it is I'm like a volcano," he said. "I either do nothing, thinking about when I'm going to do it, or I just burst, spurt out everything."

His first book of poems, "Heartsongs," was published in 2001 by VSP Publishers, a small Virginia publisher, and within weeks it shot to the top of the New York Times bestseller list, helped by his appearances on "Larry King Live," "Oprah" and "Good Morning America" and by an article in People magazine.

Four more books of poetry followed: "Journey Through Heartsongs," "Hope Through Heartsongs," "Celebrate Through Heartsongs" and "Loving Through Heartsongs." Some of his poems were set to music and released as an album of songs 14 months ago by Billy Gilman.