Matthew Joseph Thaddeus Stepanek
Date of Birth:
July 17, 1990
Height and weight 2004:
Not yet five feet, about 50 pounds.
Eye & hair color:
Hazel-blue eyes and blond hair
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 trachea through a surgical opening in the neck), ventilator (respirator), lots of extra oxygen, Broviac (tube that goes into the top of the heart for medicines and IV fluids), frequent red blood transfusions and twice weekly platelet transfusions, IV fluids at night to stabilize blood pressure, power wheelchair, monitors, and more.
Hospital: Children’s National Medical Center, Washington, DC. (“The best!” according to Mattie)
Education: Public elementary school until age 8, then homeschool curriculum. By age 13, had completed most courses/credits needed for high school graduation. Mattie also enjoyed sitting in on and studying for classes at the University of Maryland where his mother was studying for her doctoral degree.
Hobbies: Creating with Legos, reading, rock collecting, video games, going online, brainstorming, public speaking, and hanging with ‘the Martin Girls’ (the female cabin at MDA 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 [Heartsongs (2001/2002), Journey Through Heartsongs (2001/2002), Hope Through Heartsongs (2002), Celebrate Through Heartsongs (2002), and Loving Through Heartsongs (2003)]. Before his death in 2004, Mattie was working on his 6th and final collection of Heartsongs poetry (Reflections of a Peacemaker: A Portrait Through Heartsongs, published in 2005) and a collection of peace essays and letters (Just Peace: A Message of Hope, published in 2006). All seven of Mattie’s books reached the NY Times bestseller list. Mattie also had entries in other authors’ books, including Boys Who Rock the World, So You Wanna Be a Writer, I Love You, Mom, and Open My Eyes, Open My Soul.
Music: Lyricist for the CD Music Through Heartsongs (2003) performed by Billy Gilman.
Special accomplishments: Maryland State Goodwill Ambassador for MDA 2001-2002. National Goodwill Ambassador for MDA 2002-2004. Recipient of numerous awards for public speaking, advocacy (disability and peacemaking), writing poetry, and celebrating spirituality. Minister of the Word 1998-2004 and C.C.D. Teacher 2000-2004 (Sunday School teacher), both at Holy Rosary Catholic Church.
Career goals: “Inspirational speaker, ambassador of humanity, 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 known and remembered: ”When people here my name, even after I am gone, I hope they smile and say, ‘oh yes! Mattie — a poet, a peacemaker, and a philosopher who played.’ So, that is how I choose to think and speak and live each day.”