Stepanek seen with his mother who also has muscular dystrophy
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A US child poet and advocate for muscular dystrophy patients has died of a rare form of the disease.
Mattie Stepanek, 13, died in Washington on Tuesday, a hospital statement said.
Stepanek, of Rockville, Maryland, began writing poetry at three to cope with a sibling's death - and produced five
volumes that sold millions of copies.
Since 2002 he had served as the goodwill ambassador for the Muscular Dystrophy Association, which described him as "something very special".
"His example made people
want to reach for the best within themselves," said the association's chairman, the entertainer Jerry Lewis.
'Life mission'
Stepanek had dysautonomic mitochondrial
myopathy, a genetic disease that had affected him since birth.
His mother has a form of the condition, and his three older siblings died of it in early childhood.
In 2001, a small publisher issued a volume of his poems, called "Heartsongs".
Three of his volumes reached the New York Times newspaper's best-seller list, the Associated Press reported.
As the Muscular Dystrophy Association's goodwill
ambassador, he spoke at events across the US and on TV talk shows with hosts Oprah Winfrey and Larry King
Despite his illness, Stepanek was said to have been upbeat.
"It's our inner beauty, our message, the songs in our
hearts," he said in an interview in 2001.
"My life mission is to spread peace to
the world."