Posted on 06/22/2004 6:17:04 PM PDT by My Favorite Headache
Memorial on CNN right now...RIP...an incredible soul
He's OK now...
Larry King is rerunning his interview with him right now.
ANNAPOLIS, Md. -- Mattie Stepanek, the child poet whose inspirational verse made him a best-selling writer and a prominent voice for muscular dystrophy sufferers, died Tuesday of a rare form of the disease. He was 13.
Stepanek died at Children's National Medical Center in Washington, D.C., the hospital said. He had been hospitalized since early March for complications related to the disease that impaired most of his body's functions.
In his short life, the tireless Stepanek wrote five volumes of poetry that sold millions of copies. Three of the volumes reached the New York Times' best-seller list.
"Mattie was something special, something very special," entertainer Jerry Lewis, who chairs the Muscular Dystrophy Association, said in a statement. "His example made people want to reach for the best within themselves."
Stepanek, of Rockville, had dysautonomic mitochondrial myopathy, a genetic disease that impaired his heart rate, breathing, blood pressure and digestion, and caused muscle weakness.
His 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. In 2001, a small publisher issued a slim volume of his poems, called "Heartsongs." Within weeks, the book reached the top of the Times' best-seller list, the MDA said.
He wrote four other books: "Journey Through Heartsongs," "Hope Through Heartsongs," "Celebrate Through Heartsongs" and "Loving Through Heartsongs."
His poems brought him admirers including Oprah Winfrey and former President Carter and made him one of the best-selling poets in recent years.
Stepanek was hospitalized many times over the years. He rolled around his home in a wheelchair he nicknamed "Slick," and relied on a feeding tube, a ventilator and frequent blood transfusions to stay alive.
In the summer of 2001, Stepanek nearly died from uncontrollable bleeding in his throat and spent five months at Children's National. When it seemed he would not survive, the hospital got in touch with a Virginia publisher on his behalf.
Stepanek and his mother had sent the book to dozens of New York publishers, all of whom rejected it, according to Peter Barnes of VSP Publishers. Barnes said he was caught off guard when he read the work.
"I was stunned. Some of it was really good," he said Tuesday. "It was very perceptive and thoughtful."
VSP Books printed 200 copies of "Heartsongs" to be handed out to friends. But after a news conference publicizing the book, interest exploded. "Heartsongs" went on to sell more than 500,000 copies.
"Mattie rallied after that," Barnes said. "He went from being on his death bed to becoming this huge publishing success."
Despite his condition, Stepanek was upbeat, saying he didn't fear death. His work was full of life, a quest for peace, hope and the inner voice he called a "heartsong."
"It's our inner beauty, our message, the songs in our hearts," he said in an interview with The Associated Press in November 2001. "My life mission is to spread peace to the world."
He is survived by his mother.
---
On the Net:
Matthew J.T. Stepanek: http://www.mattieonline.com/index.htm
MATTIE'S POETRY
On Growing Up (Part 5)
We are growing up
We are many colors of skin
We are many languages
We are many ages and sizes.
We are many countries...
But we are one with the earth.
We each have one heart.
We each have one life
We are growing up, together,
So we must live as one family.
© Hyperion. All Rights Reserved.
The Language of God
Do you know what
Language God speaks?
God speaks Every-Language.
That's because God made
Everyone and Gave
Everyone different Languages.
And God understands all of them.
And do you know what is God's
Favorite Language?
God's favorite language is
Not grown-ups's language,
But the Language of Children.
That's because children
Are special to God.
Children know how to share,
And they never lose
Their Heart-Songs.
© Hyperion. All Rights Reserved.
On Growing Up (Part 3)
I'm not so sure about growing up.
I know that I want to grow up.
But I always thought I wanted to
Be a doctor, a priest, a Grandmaster
In Hapkido, and a daddy.
Well I'm not so sure I will be a doctor.
I wanted to be a doctor because
I love Dr. Terry Flotte, and because
I want to fix mommy and me, and
I wanted to bring back Jamie
And Katie and Stevie back
Because even though
Heaven is a Wonderful place,
Heaven is a place a Forever place.
So I've decided that I want to be
A writer instead of a doctor.
I like words.
I like reading.
I like writing.
I like making up stories.
I like making up poems. Mommy is a writer.
I like being like mommy, too.
I can still do important things
Even if I'm not a doctor.
I can write about peace and love
Like Martin Luther King Jr. and Jesus.
I can write about adventures
Like Robert Loius Stevenson and
Like Mary Pope Osborne and
Like the one who did Star Wars.
I can write and tell about fantasy
And about funny things and lots and
Lots of things that teach people
All kinds of stuff.
That's why I've decided that
I should be a writer when I grow up.
Oh, and I will still be a priest,
And a Hapkido Grandmaster,
And a daddy, too.
© Hyperion Books. All Rights Reserved.
Kindergarden-itis
My stuffed animals and babies
Don't like the big yellow monster.
They don't like the big yellow monster
That swallows Mattie up every morning,
And then takes him away for so many hours
And then brings him back home
And then spits him out "p-tooey,"
Right where it ate him in the first place.
Even when Mattie tells them,
"It's only a school bus, little guys,
I can handle it, don't worry!"
They still don't like it at all.
But now, there are only
Seventeen days left for that
Big yellow monster to swallow me
And chew me and spit me out "p-tooey..."
Because summer vacation is
Just around the corner
Where the school bus never comes.
© Hyperion. All Rights Reserved.
On Being a Champion
A Champion is a winner,
A hero...
Someone who never gives up
Even when the going gets rough.
A champion is a member of
A winning team...
Someone who overcomes challenges
Even when it requires creative solutions.
A champion is an optimist,
A hopeful spirit...
Someone who plays the game,
Even when the game is called life.
There can be a champion in each of us,
If we live as a winner,
If we live as a member of the team,
If we live with a hopeful spirit,
For Life.
© Hyperion. All Rights Reserved.
BIRTHDATE: July 17, 1990 HOME & FAMILY: Mattie lives with his mother, Jeni, in a Maryland suburb of Washington. SCHOOL: An exceptional student, Mattie is schooled at home where he performs 10th and 11th grade-level work. He also has attended a local community college part-time. MEDICAL HISTORY: Mattie has 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 took the lives of his two brothers and sister. Mattie uses a power wheelchair, a ventilator and supplemental oxygen. ACCOMPLISHMENTS: A poet since he could talk, Mattie has published five best-selling 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'S PHILOSOPHY: "Remember to play after every storm. " MDA ACTIVITIES: Mattie made a poignant appearance in the closing hour of the 2001 MDA Jerry Lewis Telethon and was featured prominently during the 2002 and 2003 broadcasts. As MDA’s National Goodwill Ambassador, Mattie represents families served by the Association at fund-raisers, at gatherings of sponsors and at other events to spread the word about MDA and its mission.
Mattie and Jerry Lewis 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. “With Mattie, there was always a silver lining. Life threw its worst at him and he responded by seeing the good. He was — he is — a shining star.” Share Thoughts send an e-mail to express your thoughts about Mattie. Make a Gift in Memory of Mattie A Full Life 
Mattie and his mother, Jeni Stepanek Stepanek, of Rockville, Md., had dysautonomic mitochondrial myopathy, a genetic neuromuscular disease that impaired almost all of his body’s major functions, such as heart rate, breathing, blood pressure and digestion, and caused generalized muscle weakness. In his last few years, he used a power wheelchair, ventilator and supplemental oxygen, and had regular blood transfusions to keep going. Stepanek’s mother, Jeni, 44, has the adult-onset form of the disease, and his three older siblings died of it in early childhood. On Being a Champion by Mattie J.T. Stepanek A champion is a winner, A hero... Someone who never gives up Even when the going gets rough. A champion is a member of A winning team... Someone who overcomes challenges Even when it requires creative solutions. A champion is an optimist, A hopeful spirit... Someone who plays the game, Even when the game is called life... Especially when the game is called life. There can be a champion in each of us, If we live as a winner, If we live as a member of the team, If we live with a hopeful spirit, For life. September 1999 © Matthew Joseph Thaddeus Stepanek Used with permission from Heartsongs, Hyperion Perhaps because he witnessed death at an early age, Stepanek was acutely aware of the value of life. Precociously intelligent, he began writing poetry at age 3 to cope with the death of his brother, and continued to fill notebooks with poems, stories and observations. Poetry, he said, “is a way that you can inspire others while you’re expressing your true feelings.” 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. 
Mattie and Billy Gilman In April 2003, singer Billy Gilman released “Music Through Heartsongs,” an album of songs based on Stepanek’s poems. 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." The young poet became fast friends with such notables as former President Jimmy Carter, entertainers Oprah Winfrey and Larry King, International Association of Fire Fighters President Harold Schaitberger and MDA Telethon anchor Ed McMahon. Forewords to his books were written by Lewis, Carter, and writers Gary Zukav and Maya Angelou. MDA Activities Stepanek and his mother were active MDA volunteers for many years. In 2001, he served as Maryland’s MDA Goodwill Ambassador, and his mother was named the MDA Personal Achievement Award recipient for the state. 
Mattie and Former President Jimmy Carter During his time as MDA’s national spokesperson, he represented families served by the Association at fund-raisers and sponsor gatherings across the country, and taped a number of TV and radio public service announcements about the work of MDA. 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.” Faulty Mitochondria 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. 
Mattie at Camp Maria, Summer 2000 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. Peacemaker-Poet-Daddy 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.” 
Mattie with his service dog, Micah. In 2002, he was the keynote speaker at the Children’s Peace Pavilion in Missouri, speaking before more than 5,000 students. He also addressed an audience of 2,000 at the Action Long Island Youth Conference in New York. His awards include the 2002 Children's Hope Medal of Honor, the 2002 Verizon Courage Award, the 1999 Melinda Lawrence International Book Award for inspirational written works from the Children's Hospice International, and a 2003 award from the U.S. Department of Health & Human Services for “providing hope to children with disabilities around the world.” 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. # # #
Reminds me of Someone Else.
Absolutely
I have some of his books..you ever read them?
God bless him. Gotta ask this question: If Mom Stepanek has the adult form of the disease, why would she have 4 children that died. Isn't she a glutton for punishment? One perhaps two is understandable but four?
What an incredible litle guy...
litle=little
She just said that the diagnosis for the particular form of MD the two older kids had were made post-mortem. By then, she had had her other two children.
This was a great kid. He lives on in his books.
Brings things into perspective....big time...
Sheesh - I didn't know he had any books. I'm sure it's very good reading...
Thanks. Appreciate the clarification.
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