Book Honors Boy Who Fought Fatal Disease

November 03, 2009|By Joe Burris | Joe Burris,joseph.burris@baltsun.com

The world knew Mattie Stepanek as a symbol of hope and peace, a best-selling author and advocate who courageously fought a rare form of muscular dystrophy before succumbing to the disease five years ago at age 13.

Jeni Stepanek knew him as a son who occasionally needed help with homework, loved Legos, and sometimes had to be reminded, "Did you brush your teeth?"

Now Stepanek, 50, who also suffers from the same disease (dysautonomic mitochondrial myopathy) that took not only Mattie's life but those of her three other children, has written a book about Mattie's life and legacy. In "Messenger," which is out in bookstores today, Stepanek writes of what it was like to be Mattie's mom well before he went on to appear on Oprah and Larry King and inspired actors and heads of state.

There are two parks named after her son (one in Rockville and one in Carlstadt, N.J.), and Stepanek says she still receives e-mails and letters from all parts of the globe from people who say that they're inspired by Mattie's life and works.

Stepanek, who lives in Rockville, recently spoke about the book via phone interview. She also spoke about one of the first local events planned for the book, a Nov. 14 signing at the Hooters in the Inner Harbor - the site of Mattie's first booksigning. That is a story in itself.

Question: What prompted you to write "Messenger" now?

Answer: I realized I had to write a book in 2004, and by 2006 I had completely outlined the entire book. But I didn't want to tell the story yet. I didn't want my raw grief to get mixed up with the story of his life. Even though I knew what I wanted in his book I felt the need to step back to offer readers a genuine book about his life and legacy. ...

Then last fall they were getting ready to do the dedication of the Mattie statue in Rockville. A little boy stopped and looked at the statue and said, "Mommy, that boy makes me feel happy inside." And the mom said, "That little boy is Mattie, and that's what he wanted to do." I said to myself that now is the time to write the story. I am amazed at what is growing from his life. He truly inspired people to believe in hope and peace. He so believed in that, and he was so real that he drew people to him.

Q: How often do you consider your son's accomplishments and say, "That's my child"?

A: I'm constantly looking at my son and not looking at the poet or peacemaker or philosopher. I'm looking at the son who needed me to be his mommy. I look at the cool things but mostly I look at the day-to-day part of his life, which was about doing his school work and doing blood transfusions and coping with the loss of his own friends.

Q: What is the connection between Mattie and Hooters restaurants?

A: Hooters is one of the many supporters of the MDA [Muscular Dystrophy Association]. When Mattie was about 7, the MDA asked him to take a photo with Hooters ladies at a golf tournament. Initially, Mattie said, "No, I won't disrespect a woman's body," but they walked over to him and told him how they were ordinary women, some students and some moms. So he took the photo. By the time he was 10, he was summoning them over for the photo, and he's in one of the Hooters calendars with them. Mattie's first book was to sell only on Amazon and through publishers. But the Hooters of the Inner Harbor said, "We will have a book signing party," and the book sold out.

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