Joseph Thaddeus Stepanek
on July 17, 1990, Mattie, as he was known to friends, family (and now
the world) suffered from a rare form of Muscular Dystrophy, known as Dysautonomic
Mitochondrial Myopathy. Though
he was not expected to live through
his first day of life, Mattie defied the odds—and not only
survived, but soared.
His disease, a genetic disorder, took the lives of his two elder
siblings, Katie and Steven, and presently affects Mattie’s
Jeni. The disease also claimed the life of Mattie’s elder
Jamie, who passed away when Mattie was only three.
Angry and saddened by Jamie’s death, the then three-year-old
Mattie, who was still learning to write, began composing poetry to
express his emotions. With his mother to help tape record and write
down his feelings, Mattie compiled quite a collection of poems,
numbering in the thousands over the course of his young life.
Mattie’s gifted intellect, heartfelt personality, and gentle
kindness caught the attention of many people around him. Those who had
read his inspirational works began to push for his poems to be
publicized; the first time Mattie was mentioned for any sponsorship
came at the tender age of six, when he was already author of hundreds
An incredibly gifted mind and a determined child, Mattie attended
public school through the 4th grade. Always as active as he could
possibly be, he earned a Black Belt in Tae Kwon Do, climbed trees,
monitored playground activity, and attended summer camp.
When his strength inhibited his ability to attend public school, Mattie
began home schooling with his mother. A fan of great literary works,
including To Kill a Mockingbird
and Moby Dick,
studied at the high school level, and even included a few college
courses in his curriculum. His precocious nature allowed him to skip
the equivalent of three grades during his education.
Though Mattie shared his poetry with countless people through
organizations such as the Make a Wish Foundation, official publication
of his works came in July of 2001, when Hyperion Books, along with VSP
Books, released his first collection, Heartsongs.
became a bestseller, and spawned four more compilations: Journey
Through Heartsongs, Hope Through Heartsongs, Celebrate Through
Loving Through Heartsongs.
narrated a book on tape version of the Heartsongs
helped to arrange an album, Music
Through Heartsongs, which
featured singer Billy Gilman.
By 2001, Mattie had become a well-known figure. He realized his dream
of speaking with former President Jimmy Carter in September of 2001,
and met the Nobel winner in October. In November, he was featured on
the Oprah Winfrey show, to speak about his book. In the tumultuous days
following September 11th, he was a voice of hope and inspiration for
Over the course of the next few years, Mattie would become a
spokesperson and National Ambassador for his patron cause, the Muscular
Dystrophy Association; a public speaker for hundreds of children; would
appear on various talk shows promoting his message of peace, and would
touch the hearts of celebrities around the world, including Lance Bass,
JK Rowling, and Jerry Lewis.
On June 22, 2004, Mattie passed away from complications related to his
disease. His funeral was attended by thousands of people, all of whom
were inspired by his works, his devotion, and his love of life. Mattie
was buried at the Gate of Heaven Cemetery in Maryland, next to his
MDA · PETITION
THANK YOU ·