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. Helping Others
In October, Mattie signed on for a rare third term as National Goodwill Ambassador for the Muscular Dystrophy Association. According to the group, he was only the second young person to serve three terms and the first to do so in almost 40 years.
"The words 'amazing' and 'outstanding' aren't enough to describe Mattie and the tremendous pride I feel to be his teammate in MDA's fight," said MDA National Chairman Jerry Lewis when the third term was announced. "We're deeply grateful that this wise and gifted young man has agreed to continue his terrific and very effective work for MDA."
A four-month-long hospital stay in 2003 limited some of his activities for the group, but he participated in many events near his suburban Washington, D.C., home, and he appeared via satellite from Baltimore on the 2003 Jerry Lewis MDA Telethon.
As he told Good Morning America last year, "It makes me feel great that I've accomplished so much and that I have so many people who help me who are praying for me to pull through this."