Mattie Stepanek, the tireless 13-year-old child poet whose inspirational verse made him a best-selling writer and a prominent voice for muscular dystrophy sufferers, died Tuesday at Children’s National Medical Center in Washington, D.C., where he had been hospitalized since early March, said a statement from the Muscular Dystrophy Association.
The cause of death was complications related to the genetic disease that had impaired most of his body’s functions, a rare form of MD called dysautonomic mitochondrial myopathy, which impaired his heart rate, breathing, blood pressure and digestion, and caused muscle weakness.
Among his legacy: five volumes of poetry that sold millions of copies – three of which reached The New York Times bestseller list. His poems brought him admirers including Oprah Winfrey and former President Jimmy Carter and made him one of the best-selling poets in recent years.
“Mattie was something special, something very special,” entertainer Jerry Lewis, who chairs the MDA, said in a statement. “His example made people want to reach for the best within themselves.”
Winfrey also released a statement saying Mattie “was 13 in human years, but a very old soul so wise beyond his years.
“I’ve learned so much from him…have saved every email,” she added. “He was a good friend. I always called him ‘my guy.’ I knew he was an Angel on earth … now he’s got his wings.”
As TV commentators have been saying since the news of Mattie’s death was announced, his was a voice of hope. Mattie’s mother, Jeni, 44, has the adult-onset form of the disease, and his three older siblings died of it in early childhood.
Stepanek began writing poetry at age 3 to cope with the death of a brother, according to the MDA. In 2001, a small publisher issued a slim volume of his poems, called Heartsongs. Within weeks, the book reached the top of bestseller lists.
He wrote four other books: Journey Through Heartsongs, Hope Through Heartsongs, Celebrate Through Heartsongs and Loving Through Heartsongs.
Hospitalized many times over the years, Stepanek got around in a wheelchair he nicknamed “Slick,” and relied on a feeding tube, a ventilator and frequent blood transfusions to stay alive.
Despite his condition, Mattie remained constantly upbeat, saying he didn’t fear death. “It’s our inner beauty, our message, the songs in our hearts,” he told the Associated Press in November 2001. “My life mission is to spread peace to the world.”