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.
“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.”
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.
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. |
