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Name: Mattie Stepanek
Age/birth date: 11, born July 17, 1990.
Home: Stepanek lives in Upper Marlboro, Md.
Disability: Dysautonomic mitochondrial myopathy, a rare neuromuscular disease that impacts his body’s "autonomic" or "automatic" functions. The condition causes generalized muscle weakness, breathing, digestion and heart problems. He uses a power wheelchair, ventilator and extra oxygen as needed. He is able to walk with foot braces, but the wheelchair enables him to move with his equipment, which weighs hundreds of pounds.
Family: Stepanek's mother, Jeni, has the adult onset form of the same disability as her son. She uses a power wheelchair. Mattie is the youngest of four children. Sister Katie and brothers Stevie and Jamie have died from the same condition he has.
School: Stepanek is studying a high school curriculum through home schooling. This is his third year outside the public school system and Mattie likes it. He started home schooling because of his disability, but he thinks it is the right choice for him educationally, medically and emotionally. Having skipped grades, he was still really far ahead of his peers. "A lot of people think I am a genius, but I am not. I am very smart, but I have to work very hard and study," Mattie said. "I like to read and I am very gifted with writing and philosophy and thinking. But I am not like some kids, who don't have to study or remember everything as soon as they see it. I work hard, and sometimes get frustrated."
Hobbies: Reading and writing. His favorite books include "To Kill a Mockingbird," "The Giver," "The Color Purple" and "The Lord of the Flies." He also likes the Tolkien and Harry Potter books. He likes to write in all kinds of forms, ranging from poetry, short stories, essays and even lists. "I make lists of things to do, to see, to think about and to write about," he said. "I just love to write."
Favorite quote: Mattie's favorite quotes are his three guiding philosophies in life. One is his, "Remember to play after every storm." Another is his mom's, "Celebrate life every day, in some way." The third comes from his hero, former president Jimmy Carter, "If you want something bad enough, never give up trying to reach it, and you will succeed." Greatest accomplishment: "My greatest accomplishment to date is being alive," Mattie exclaimed. "There have been so many close calls on my life and I am still here and living and doing things and spreading my message of peace and hope." His book, "Journey Through Heartsongs," hit No. 1 on the New York Times Best-Seller list. He also earned a first-degree black belt in martial arts and served as the keynote speaker at several conferences.
Role models: His mother, Oprah Winfrey and Jimmy Carter are Mattie’s role models, but he said he is also inspired by God.

Facing the day
At 11 years old, Mattie Stepanek has confronted more climactic experiences in his few years than many will face in their full lifetimes. From appearing on talk shows to dealing with the daily routine in his wheelchair, he makes the facts of life seem manageable because he is living as much as he can. "A typical day for me involves a lot more than you would think," Mattie said. "There are so many medical things that I have to do, and that have to be done to me and for me. Some hurt, some don't, but they all take time. They all remind me that I have a life-threatening disability every single day." He admits reality can be difficult. Simply existing can sometimes be challenging for him. Still, his method for coping depends on the basics: "I get through each day with prayer and hope, and with the help of my mom, my friends and some great doctors and nurses."

Cherishing childhood
With so much to contemplate, Mattie, nevertheless, has definite likes and dislikes associated with childhood. He delights in playing practical jokes on his caregivers. During a hospital visit, Mattie tried to get a nurse to trigger his "remote control fart machine" for him when he was going to sleep in surgery. The surgical staff was afraid the laughter would be too much distraction, but Mattie is gleeful at the thought.

On a more serious note, his favorite school subjects are American history, literature and anything that involves studying people. He is clear about not liking science and although he said he is good at math, and at times thinks algebra is fun, it falls outside his favorite category. He likes writing because it helps him express his feelings. "It is a creative way to share what's inside of me and what I think about things outside of me," he said. "It is a way to inspire myself and (for) other people to think about life, and things greater than ourselves."

Writing and reaching people
Mattie seems to be masterful at touching people’s spirits. The Muscular Dystrophy Association recognized his strength as a communicator and named him in December to be the group's 2002 National Goodwill Ambassador. "He is an excellent public speaker and has very strong grasp of MDA's mission," said Bob Mackle, MDA’s director of public information. "He has firsthand experience with MDA services and programs, such as attending MDA summer camp. ... Mattie is an amazing young man with a wisdom, spirit and perspective that is hard to match. MDA was honored that he agreed to continue to help spread the word about our mission while he works to make peace in the world."

Notoriety was initially unsettling to Mattie. "At first, I was not comfortable with people knowing me everywhere. I felt like I was getting praise for something that I didn't deserve," he said. His mom helped him understand that people want to respond to him because he is sharing his message and it is helping them. "She said if you reach out in some way to touch the world, you must be ready for the world to reach back," he said.

So, with two books already on the New York Times Bestseller list and another one being released in April, Mattie is making the rounds. He is attending book signings, smiling in front of cameras and reading his poems aloud. "I don't have a favorite poem that I have written because the thousands of poems I have written have been about so many different things," Mattie said. Indeed, his works range from being about profound subjects like God and nature to more playful pieces, such as "Kindergarden-itis." To choose a favorite poem overall, he said, "I would have to sit down and really think about which one means the most for life."

Sharing his vision
Choosing a favorite poem may be a tough assignment, but managing his fan mail is a more daunting challenge. Mattie explains how he deals with the e-mails and mail he gets. "I read them all, but I am not able to respond to everything, even though I wish I could."

The young poet said he hopes people understand him and try to follow his message: "Ultimately I would like to be remembered as Mattie. I would like people to remember to play after every storm and to take time to listen to heartsongs." This term, in the title of all of his books, he defined on Oprah as "inner beauty." Mattie expresses its significance best: "We need to listen to our own song, and share it with others, but not force it on them. Our songs are different. They should be in harmony with each other. I would like to be remembered as a poet and a peacemaker, and perhaps even a philosopher who took time to play."