Young Poet, Peacemaker Dies at 13
June 22, 2004 -- In his 13 years, Mattie Stepanek became nationally known as a “peacemaker and poet” whose story of living with a rare neuromuscular disorder led to five published books, numerous television appearances and a friendship with former President Jimmy Carter.
The champion for muscular dystrophy sufferers lost his fight with mitochondrial myopathy this afternoon while surrounded by his mother and close friends, said the Children's National Medical Center in Washington, D.C. He would have turned 14 on July 17.
A poet since the age of 3, Mattie started writing in part to help him deal with his disease, which causes generalized muscle weakness and difficulty in regulating such body functions as heart rate and breathing. He used a power wheelchair, ventilator and supplemental oxygen, in addition to other treatments.
His mother, Jeni Stepanek, has a milder, adult-onset form of the disease, but was not diagnosed until her four children were born. Mattie's two brothers and a sister also died of the disease.
The Power of Love
Mattie's best-selling poetry books celebrate the power of love and peace. "This one explores loving life, loving people, loving God, loving peace," Mattie told ABC News' Good Morning America in March 2003 when Loving Through Heartsongs was published.
He also sent President Bush a poem before the war in Iraq, asking him to seek peace. It read in part, "We cannot get caught with a bad attitude or we are not choosing peace."
Mattie's work and life experiences captivated the national media, with television appearances on such programs as The Oprah Winfrey Show, Larry King Live, Today, The Early Show and C-SPAN's Book TV.
A longtime admirer of the 39th president, Mattie met Carter, an advocate for peace in war-torn countries, on Good Morning America in 2001. According to the Muscular Dystrophy Association, the two were collaborating on a book about peacemaking.
His words also inspired teen country music singer Billy Gilman to write an album about Mattie's struggle. Heartsongs, which includes Mattie's poetry, was released last year.
