Why we "Fill the Boot"
MDA AMBASSADOR, BEST-SELLING AUTHOR MATTIE STEPANEK DIES AT 13; LEAVES A LEGACY OF PEACE, HOPE
TUCSON, Ariz., June 22, 2004 — The Muscular Dystrophy Association mourns the loss of a “shining star,” 13-year-old Matthew (Mattie) J.T. Stepanek, who died today in Washington due to complications from his rare neuromuscular disease.
Stepanek made a big impact in his short life. He was internationally known as the best-selling author of five books of poetry, as a peace advocate and as MDA’s National Goodwill Ambassador from 2002 through 2004.
“Mattie was something special, something very special,” said MDA National Chairman Jerry Lewis, who was a good friend of Stepanek’s. “His example made people want to reach for the best within themselves. It was easy to forget how sick he was because his megawatt personality just made you want to smile.
Stepanek’s mother, Jeni, 44, has the adult-onset form of the disease, and his three older siblings died of it in early childhood.
At an early age, Mattie developed his personal life philosophy: “Remember to play after every storm. You go through many hard things in life but if you are confident, you'll get through it. You always have to remember to celebrate because that’s what charges you up to get through another life storm.”
In 2001, a slim volume of his poetry, Heartsongs, was published by a small Virginia publisher, and Stepanek’s fame took off. Within weeks, his book shot to the top of the New York Times best-seller list, and he was featured in a variety of national media, including “The Oprah Winfrey Show,” “Good Morning America,” People magazine and “Larry King Live.” Four more books followed, including Journey Through Heartsongs, Hope Through Heartsongs, Celebrate Through Heartsongs and Loving Through Heartsongs, released in January 2003.
On hearing of Stepanek's death, Gilman, MDA's National Youth Chairman, said, "Mattie changed my life and I'll miss him.
"Whenever a great soul is lost, the world is a sadder place. Yet I think Mattie's message of peace and hope will continue for a long time to come."
He also made three appearances on the national Jerry Lewis MDA Telethon, which were huge hits. He cited those experiences, and meeting Jerry Lewis, as among the highlights of his life.
When asked how he felt about being named MDA’s national ambassador for a rare third year, he said, “I love doing stuff for MDA and am glad that I can continue to help. We’re raising money for a cure and on the way we’re finding ways to keep celebrating.”
Stepanek’s disease, dysautonomic mitochondrial myopathy, is one of more than 40 muscle-wasting diseases covered by MDA’s research and services programs. The disease affects the mitochondria — tiny “power plants” that exist inside most of the body’s cells and generate energy for life and growth. Dozens of varieties of mitochondrial diseases have been identified, with a complex array of symptoms. Doctors believe Stepanek had an extremely rare mutation of the disease.
Born July 17, 1990, Mattie wasn’t expected to live longer than 24 hours, but somehow defied the odds. He attended public school through the fourth grade, dragging his oxygen canister behind him on a luggage carrier. Despite his fragile health, he earned a black belt in martial arts, climbed trees, roller-skated and served as a peer mediator on the school playground. Each year until his death, unless he was in the hospital, he attended MDA summer camp at Camp Maria in Leonardtown, Md.
As his strength declined, Stepanek was homeschooled by his mother, a part-time researcher at the University of Maryland and doctoral student with a master’s degree in education. His curriculum included high school and college-level classes, and he read literally thousands of books.
A Deep Faith
In the spring of 2001, Stepanek had a tracheostomy (insertion of a breathing tube into his throat). Complications from that operation led to uncontrollable bleeding in his trachea, and by mid-summer he was on the brink of death. Doctors at Children’s Hospital in Washington warned that a laugh or a cough would cause his severely eroded windpipe to collapse, leading to death by suffocation. It was in fulfilling his last wishes that his first book of poetry was published.
Doctors aren’t sure why the tracheal bleeding suddenly stopped in August 2001, and labeled the cessation an “unexplained spontaneous recovery.” Jeni Stepanek later told Larry King, “Mattie is a combination of miracle and the best medical practice possible.”
In an interview with MDA’s Quest magazine published in June 2002, she noted that her son, who had a deep faith in God, had decided to go home before the bleeding stopped, and had said a prayer just before leaving the hospital: “Dear God, I’ve decided to go home. They think I’m going home to die. Please let me go home to live. Whether I live one day or 10 years, please let me spend every minute until I die living and celebrating and spreading my message of hope and peace.”
Stepanek was hospitalized again in 2003 for a bleeding airway. He was in grave condition for much of his four-month stay. After his release in May, he resumed his schedule of public appearances and book signings.
He'd returned to the hospital in early 2004, but was released in time to appear at an MDA fund raiser on Feb. 21. He was hospitalized again on March 8.
Stepanek made good use of his gift of time. As his poetry rose to the top of the best-seller lists, he used his fame to speak out for peace and for the MDA cause.
Stepanek urged people to “choose to make peace an attitude. We have to want it and make it something that truly matters inside of us.”
In 2003, three MDA offices in the Washington–Baltimore area created the Heartsong Awards, to be given to people who exemplify Stepanek’s spirit in their support of MDA.
Stepanek — who said he wanted to live to be 101 and be “a poet, a peacemaker and a daddy” — always was realistic about the possibility of a cure being found for his rare disease in time to save him.
“But even if they don’t find a cure in my lifetime, we can never give up hope,” he said. “If you can help do something to fight it, eventually we can find a cure and we can all be happy that each of us were part of the effort.”
Mattie is survived by his mother; his service dog, Micah; and friends.
Page Last Updated: May 22, 2006 (06:49:18)