Full Name: Matthew Joseph Thaddeus Stepanek
Nickname: Mattie
Date of Birth: July 17, 1990
Birthplace: Washington, DC
Height and weight: Not yet five feet, about 70 pounds.
Eye & hair color: Gray-blue eyes and blond hair that gets darker every year
Disability: Dysautonomic Mitochondrial Myopathy
How the disability affects Mattie: Interrupts autonomic, or automatic, functioning (for example,
breathing, heartrate, blood pressure, body temperature, digestion, utilization of oxygen...)
Medical needs: Tracheostomy (tube that goes into my trachea through my neck), ventilator
(breaths for me), lots of extra oxygen, Broviac (tube that goes into the top of my heart for medicines and IV fluids), red blood transfusions and platelet transfusions (weekly), IV fluids at night to stabilize blood pressure, power wheelchair, and more...
Hospital: Children's National Medical Center, Washington, DC. (they're the best!)
Education: I homeschool now, currently in my third year of a high school curriculum.
I attended public school until age nine, and have taken courses at a community college.
Hobbies: Building Legos, reading, rock collecting, video games, going online, brainstorming,
public speaking, and hanging with 'the Martin Girls' (the female cabin at summer camp).
Writing interests: I love to write. I write poetry, essays, prayers, short stories, chapter books,
I even write lists (like lists of things to write, to do, to see, to remember...).
Eventual hobby: I am saving money for a good video camera so I can do things like
interviews, and documentaries, and just have fun collecting memories.
Collections: Legos, Yu-Gi-Oh cards, books, and rocks (from everywhere!)
Interesting facts: I earned a First Degree Black Belt in Hapkido (Martial Arts) before I used a
wheelchair, and I am the volunteer Head Elf for Fantasy Flight ("North Pole" trip sponsored by United Airlines and Children's Hospice International.)
Other interesting facts: I play a ton of practical jokes, and I'm single (ha ha). Also, my mom
gave me the dining room in our condo to have as my 'bachelor's pad.' It's really cool.
Publications: The Heartsongs series of poetry books (all five books were NY Times Bestsellers). Also, entries in the books Boys Who Rock the World, So You Wanna Be a Writer, and I Love You, Mom.
Music: Lyricist for the CD Music Through Heartsongs, sung by Billy Gilman.
Special accomplishments: National Goodwill Ambassador for MDA, and lots of neat awards
for public speaking, advocacy (disability and peacemaking) and writing poetry.
(One day I'd like to be nominated for Poet Laureate).
Career goals: Inspirational speaker, ambassador for peace, writer, and a daddy.
What matters to Mattie: "Praying and playing, and celebrating life every day in some way."
Mattie's motto: "Think gently, speak gently, live gently."
Mattie's philosophy: "Remember to play after every storm."
How Mattie wants to be remembered: As a "Poet, Peacemaker, and Philosopher Who Played"
About Mattie:
Mattie likes to speak about peace efforts and global tolerance.
He has spoken to school children and business leaders, medical personnel and church groups, fire fighters and Harley Davidson riders, all across America. Mattie loves talking to anyone who loves to listen, and then ask questions! One of his favorite speeches was when he got to introduce his hero, Former President Jimmy Carter, at the Kennedy Center in Washington, DC.
Mattie has also shared his messages of hope and peace on many television programs. He has been on the Oprah Winfrey Show, Larry King Live, Good Morning America, Primetime, The Today Show, and many other programs many times. Every year, he also helps with the Jerry Lewis Labor Day Telethon. In 2002, he drove cross country with his mom, and friends, Sandy and Chris, to be in Los Angeles for the Telethon.
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Mattie & Lance Bass
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He loved getting to see his country coast to coast from the van. In 2003, he was unable to travel because of a decline in his health, so he enjoyed co-hosting all 21 hours of the local Baltimore, MD station telethon.
Mattie feels very lucky to have met many wonderful people during his journey through life. He has become close friends with lots of great people, including Jimmy Carter, Oprah Winfrey, Larry King, Christopher Cross, Lance Bass, and Billy Gilman. During 2003, Mattie and Billy Gilman collaborated on a CD project, Music Through Heartsongs. On the CD, Billy sings 12 of Mattie's poems that have been put to various styles of music, including Celtic, soft rock, Hawaiian, country, jazz, and pop-Christian style. One of his favorite tracks,
I AM/Shades of Life, was made into a music video, where Mattie has a cameo.
Mattie also feels very blessed just to be alive at age 13. Children born with his disease do not usually live very long. Mattie knows that each day is a gift, and he makes the most of it. He says he gets his strength from God and his mom, and also from the people that become part of his circle of life. "People tell me I inspire them. And that inspires me. It's a beautiful circle, and we all go around together, with and for each other. What a gift," says Mattie. |
