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Mattie J.T. Stepanek is a 13-year-old young man who was born with a
rare neuromuscular disease called dysautonomic mitochondrial
myopathy. His disease is one of the 43 types of diseases being
researched by the Muscular Dystrophy Association .

Mattie has a sister, Katie, and two brothers, Stevie and Jamie, who
each died during early childhood from this same infant onset disease
that affects Mattie. Mattie's mother, Jeni, has the adult onset form of
this disease. She did not know that she would ever have the disease, or
that she would pass such a disease on to her children until after she
gave birth to them.
Mattie lives with his mom and his service dog, Micah, in Maryland.

Even though Mattie's form of this neuromuscular disease is a mutation
and very, very rare and difficult to understand, his doctors have learned
a lot about what it does to Mattie's body and some of the ways to help
Mattie stay as healthy as possible. Mattie uses a wheelchair to get
around, like his mom, Jeni. But he also needs a trach (a breathing tube
in his neck/trachea), a ventilator (machine that breathes for him), lots of
extra oxygen, a Broviac (tube into his heart for medicines and blood
products), foot braces, and lots of other equipment. It may sound like a
lot of stuff for a kid, but Mattie really knows how to "celebrate life" and
"play after every storm."

One of the things Mattie has done to help him cope with loss and
continue celebrating life is to write. Since the age of three, Mattie has
been dictating, recording, and writing poetry, short stories, and essays
about many topics, such as grief, nature, love, disability, hope, life, and
peace. He put together his first collection of poetry at age five for a
school contest. At age 11, he became a New York Times bestselling
author when his volumes of poetry were published. Now, he has had
five books of "Heartsongs" poetry collections reach the New York
Times bestseller lists. His second book, Journey Through Heartsongs,
reached all the way to number one!

In addition to writing, Mattie loves public speaking. In his role as the
National Goodwill Ambassador for the Muscular Dystrophy Association
(MDA), Mattie does a lot of speaking about how the MDA helps kids and
adults with neuromuscular diseases.

Mattie died Tuesday June 22, 2004 of a rare form of the disease. He
was 13.