Mattie's Heartsong

October 20, 2001|By Athima Chansanchai | Athima Chansanchai,SUN STAFF

Mattie Stepanek rolls onto the set of The Oprah Winfrey Show in his electric wheelchair with a big grin on his face. Winfrey greets him with a warm hug and dabs at her eyes with a tissue. The audience gives him a standing ovation.

"How are you?" she asks the 11-year-old from Upper Marlboro.

Mattie has a rare form of muscular dystrophy that's taken the lives of three siblings and nearly took his this summer. But today he looks strong, happy, and he tells Winfrey how he feels: "Much better, health-wise. Very well, excitement-wise!"

Winfrey flew Mattie to Chicago to fulfill one of his wishes - to be on her show and spread his message of peace, mostly through his poetry. While hospitalized this summer, the hospital staff tried to make his dreams come true.

So, here he is, alongside daytime's most popular diva, reciting poems from his book, Journey Through Heartsongs, verses about playing on a swing, the terrorist attack in New York, the music in his soul:

I have a song, deep in my heart

And only I can hear it.

If I close my eyes and sit very still

It is so easy to listen to my song.

Winfrey calls Mattie her "new friend." And he returns the gesture: "You, you're very beautiful." As their time together draws to a close, she says, "Everybody who's heard you today has felt just a little quiet sigh of peace." She looks to her audience. "Don't you feel better?"

Mattie has that kind of effect on people - calming and life-affirming, despite the struggles he's endured. He has lived longer than any of his siblings who had mitochondrial myopathy, a rare form of muscular dystrophy that impedes his breathing. Mattie has a unique philosophy on life - "Remember to play after every storm" - and he is anxious to share it.

"Bad things, like what just happened in New York, sad things like losing a family member or a best friend - those are life storms," he says, sitting in the living room of his home. "And when the life storm is over, instead of mourning and holding on to the fear and just waiting to be crushed by the next life storm, we should celebrate that we got through the life storm so that next time we can get through it and celebrate again."

Lately, Mattie has had plenty of reasons to celebrate. Before Oprah, there was his conversation with Jimmy Carter, the former president he idolizes as a role model. And tomorrow, he'll be appearing at his first Baltimore book signing at Hooter's in the Inner Harbor.

Hooter's? "I don't want people having the wrong impression of my son and his book," says Mattie's mother, Jeni Stepanek, by way of explanation. "Hooter's is the second-largest sponsor of the Muscular Dystrophy Association."

Mattie's brush with celebrity all began this summer.

From March until August, Mattie was in the Pediatric Intensive Care Unit at Children's National Medical Center in Washington. He fell into a coma at one point, and there were times when it wasn't certain he would make it through a 12-hour nursing shift. But when the young boy rallied, Marissa Garis, a publicist at the hospital, decided to get involved in making his recovery memorable.

"They not only kept my son's body alive - in spite of all the odds - they kept my son's spirit alive," says his mother, 42 and divorced.

Garris knew of Mattie's regard for Jimmy Carter, and she made the contact. The boy and Carter talked for 15 minutes and have kept in touch ever since. Mattie holds Carter's philosophy close to his heart - "If you want something bad enough, never give up and you'll get it."

Having written poetry since he was 3, his next wish was to get published. "It's an interesting way that can inspire others while you're expressing your true feelings," Mattie says of his verse.

Garis and her team called Cheryl Barnes, who runs VSP Books in Alexandria, Va. Barnes brought her family to the hospital, where Garis met them with some of Mattie's poems.

"We're all thinking, this is no little kid with cute little poems, this is profound," says Barnes of her June visit to the hospital. "We were so caught off guard we had to pull ourselves together before we met him."

Five days later, Barnes presented Mattie with Heartsongs, a paperback. Soon the demand for his books was so great Barnes created a separate phone bank and assembled a staff just to handle orders for the book.

Barnes then approached Mattie about putting out another book. A hardcover, Journey Through Heartsongs - which includes a foreword by Carter - appeared earlier this month and overtook its predecessor, selling 30,000 copies. In a good year, Barnes says her company sells 50,000 copies of all their books.

"Here's a child who's tethered to all this equipment, but this is also a kid who's read thousands of books," says Barnes. "If you read all the books he has, your experience goes beyond the bounds of where you live."

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