June 22, 2004 -- It is with great sadness that the IAFF reports the death of our hero, MDA National Goodwill Ambassador and bestselling author Mattie J.T. Stepanek. Stepanek, 13, died June 22 at Children's National Medical Center, in Washington, DC after a lifelong struggle with Mitochondrial Myopathy, a form of Muscular Dystrophy. Mattie died surrounded by his mother, Jeni, and close friends.
"It's a sad day for the IAFF and for me," says IAFF General President and MDA Vice President Harold A. Schaitberger. "As we celebrate the 50 years of IAFF-MDA joining forces to fight muscular dystrophy, we have lost a close friend and a true hero of this battle.
"I always admired Mattie's courage, intellect and fire fighter-like passion to battle the odds and emerge victorious," Schaitberger continues. "I was proud to call Mattie a friend. He had wisdom beyond his years and an understanding of the preciousness of life that is quite remarkable. His achievements make fire fighters proud of their association with Mattie and with the MDA."
Mattie's spirit was an inspiration to all fire fighters. In an open letter to the fire fighters published in the March-April 2004 issue of the IAFF magazine, he congratulated the IAFF, and all of those who are part of the IAFF, on 50 great years of supporting MDA.
"It's hard for me to imagine what life was like 50 years ago for people with muscular dystrophy. And it's even harder to imagine where MDA would be today without the incredible support of the IAFF's fire fighters and paramedics," wrote Mattie.
"When I think of fire fighters, I think of the wonderful men and women who not only do amazing things in their everyday jobs, but who also take their free time to care for and give to others. I think of the many great fire fighters I've met at softball tournaments, at the Jerry Lewis MDA Telethon and at MDA summer camp. I think of Harold Schaitberger and our great friendship. I think of, and continue to pray for, the New York fire fighters who bravely gave their lives on September 11, 2001, and others who have lost their lives in the line of duty," he wrote in his letter.
Mattie's poetry, his wit and wisdom, and his message of courage inspired thousands of delegates at the 2002 IAFF convention when he shared a story of personal bravery with the IAFF family. Fire fighters listened to a touching story of courage and hope from someone who knew how to overcome the biggest of challenges and be a champion.
Those present at the convention struggled to hold back tears as Mattie described how New York fire fighters gave him the trophy he'd won at an MDA tournament in New York. The next day was September 11 -- and the fire fighter who gave him that trophy was one of the 343 who made the ultimate sacrifice on that morning. Just like the list of Mattie?s accomplishments, his tremendous love, respect and admiration for his "heroes" soared since September 11.
Mattie and his mom, Jeni, spent many wonderful weekends every year with hundreds of fire fighters who play softball for three days at the Prince George's County, MD Local 1619 IAFF-MDA Softball tournament the to raise millions of dollars for the MDA.
He loved to be with fire fighters at the MDA Summer Camp Maria in Leonardtown, Maryland, every year. "Fire fighters I've met through MDA are some of the most generous people I've known," said Mattie. "I have a lot of respect and love for fire fighters because they put other people's lives before their own. Even though they've seen some hard things in their jobs, they remember to 'play after every storm,' which is my personal philosophy. They've offered me their friendship and made my life richer."
Mattie was MDA's National Goodwill Ambassador in 2002, 2003 and 2004. He came to national attention after President Schaitberger, Jerry Lewis and Ed McMahon introduced Mattie during the 2001 national MDA Labor Day Telethon.
A poet since he could talk, Mattie has published five bestselling poetry books, Heartsongs, Journey Through Heartsongs, Hope Through Heartsongs, Celebrate Through Heartsongs and Loving Through Heartsongs.
As a result, Mattie's life story has been chronicled in the national media, and his national television appearances include "The Oprah Winfrey Show," "Good Morning America," "Larry King Live," "Today," "CBS Early Show" and C-SPAN's "Book TV." He can count former President Jimmy Carter, MDA National Chairman Jerry Lewis and MDA Board members Ed McMahon and Jann Carl among his close friends.
Mattie lived with his mother, Jeni, in a Maryland suburb of Washington. He was an exceptional student, schooled at home where he performed 10th and 11th grade-level work. He had also attended a local community college part-time.
Mattie had Mitochondrial Myopathy, a genetic neuromuscular disorder that causes generalized muscle weakness and difficulty in regulating many body functions, such as heart rate and breathing. His mother has the same disease, and it also took the lives of his two brothers and sister.
Please keep his mom, Jeni, in your thoughts and prayers. The family has requested time to grieve privately.
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