Mattie dressed as a biker on
his tricked-out wheelchair for Halloween. |
My name is Mattie Joseph Thaddeus
Stepanek (my real name is Matthew, but I like Mattie). I am almost 11
years old, and I home school doing a high school curriculum. I began
writing when I was about 3 years old, and now have a collection that
contains thousands of poems, dozens of essays and short stories, and many
illustrations. I have even bound some of my books at home, and a bound
anthology of my writing was presented to the Library of Congress during
the Fall of 2000. I have also won many awards for my writing, including
the Melinda A. Lawrence International Book Award in 1999 for 'most
inspirational work.'
I have a rare form of muscular
dystrophy called mitochondrial myopathy, and I also have something called
dysautonomia. That means that my 'automatic' systems, like breathing,
heart rate, body temperature, oxygenation, digestion, and things like that
don't always work well on their own.
Mattie showing his book at the
Library of Congress in Washington, D.C. |
So, I use extra oxygen all the time,
and when I am tired or sleeping I use a ventilator that breathes for me
and some other machines, too. I also use a power wheelchair much of the
time to save energy and move my medical equipment around. My two brothers
and one sister died during childhood from the same thing I have, and my
mother uses a power wheelchair all the time because she has the adult form
of this disability.
I love to read, write, and do
public speaking at conferences and seminars. This year I was chosen to be
the Maryland State Goodwill Ambassador for the Muscular Dystrophy
Association. I get to participate in many fundraising events that will
help find a cure for neuromuscular diseases, and support children and
families in celebrating life during the time before a cure is found. I
also enjoy playing with Legos, drawing, Pokemon, and studying about famous
people and the Martial Arts (I have earned a 1st Degree Black Belt in a
Korean art similar to Tae Kwon Do).
Mattie at the MDA camp |
When I grow up, I want to be a
peacemaker. My biggest role model for this is Jimmy
Carter, who has been a wonderful peanut farmer, politician, and
peacemaker... I call him the 'perfect hero.' I would like to work as a
mediator, and share my poetry, essays, and philosophy with others so that
they may be inspired to work with other people, too. I want people to know
that in every life, there are storms. But we must remember to play after
every storm and to celebrate the gift of life as we have it, or else life
becomes a task, rather than a gift. We must always listen to the song in
our heart, and share that song with others. |
--
Simply type " Celebrate Through
Heartsongs"
in the search engine
on 
