- The Washington Times - Wednesday, June 23, 2004

ASSOCIATED PRESS

Matthew J.T. Stepanek, who overcame a form of muscular dystrophy to write five books of poetry, died yesterday. He was 13.

The Rockville boy known as Mattie died at Children’s Hospital in the District less than a month before his 14th birthday. He suffered from dysautonomic mitochondrial myopathy, a genetic neuromuscular disease that interrupts automatic functions, including breathing and digestion.

He was sick at birth, but managed to survive. At the age of 3, he began writing and went on to become a phenomenon — publishing five books of poetry, including “Heartsongs.” He was the lyricist for the “Music Through Heartsongs” record. He appeared on shows including “Oprah” and “Larry King Live” as he endured medical needs including a ventilator and weekly blood transfusions.

Born July 17, 1990, Mattie was diagnosed with the rare mutation of the muscle-wasting disease. Doctors didn’t expect him to live longer than 24 hours.

He was hospitalized many times throughout his short life. He rolled around his home in a wheelchair he nicknamed “Slick,” and relied on a feeding tube, a ventilator, and frequent blood transfusions to keep him alive.

In the summer of 2001, he nearly died from uncontrollable bleeding in his throat and spent five months at Children’s. When it seemed he would not survive, the hospital got in touch with a Virginia publisher to try to make what seemed to be a last wish come true by printing his work.

Mattie and his mother had sent the book to dozens of New York publishers and had been rejected, said Peter Barnes of VSP Books. But Mr. Barnes said he was surprised when he read the work.

“I was stunned, some of it was really good,” he said yesterday. “It was very perceptive and thoughtful.”

VSP Books printed 200 copies of “Heartsongs” to be handed out to friends. But after a press conference publicizing the book, interest exploded. “Heartsongs” went on to sell more than 500,000 copies.

“Mattie rallied after that,” he said. “He went from being on his deathbed to becoming this huge publishing success.”

After recovering, Mattie followed up several months later with “Journey Through Heartsongs” and went on to publish three more books. He counted the likes of former President Jimmy Carter, who wrote the foreword to one of his books, among his friends.

“I feel very close to God, He’s helped me a whole, whole lot,” Mattie said in a 2001 interview with WRC-TV (Channel 4). “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 had been a national goodwill ambassador for the Muscular Dystrophy Association since 2002.

“Mattie was something special, something very special,” MDA National Chairman Jerry Lewis said in a statement from the association. “His example made people want to reach for the best within themselves. It was easy to forget how sick he was because his megawatt personality just made you want to smile.”

Mattie is survived by his mother, Jeni, 44, who lost three other children to a rare form of muscular dystrophy, and suffers from the disease herself.

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