Sick Boy With a Healing Touch

His skin was ghostly white. Tubes were everywhere. His body was rail thin.

So sick was Mattie Stepanek that doctors--who’d given the Upper Marlboro, Md., boy just two to five days to live--asked him if there was anything he wanted before he died, perhaps a new toy or a favorite food.

Yes, he answered. He wanted someone to publish his poems, not so he could make money but so others could find in his words the strength and resolve that he’d found in himself and the world around him.

Fast-forward five months. Mattie, who suffers from a rare form of muscular dystrophy, is sitting in his wheelchair at Barnes & Noble in Alexandria, Va., chatting it up with friends and waiting to read from “Journey Through Heartsongs,” the sequel to his first book, “Heartsongs,” a bestseller.

With a possible multibook deal in the works with Hyperion, 11-year-old Mattie could become a household name. Think of the “Chicken Soup for the Soul” series.

Hyperion, which is owned by Disney and has published such books as “The Best-Loved Poems of Jacqueline Kennedy Onassis,” will partner with VSP Books of Alexandria, the family-owned company that volunteered in June to grant Mattie’s wish and print his first book.

Cheryl Shaw Barnes, founder and owner of VSP with her husband, Peter, confirmed the partnership. A Hyperion spokeswoman said Monday the details are still being worked out.

“It got too big for us,” says Barnes. “This is going to be wonderful for Mattie and for us, too. We were starting to get more requests than we could print. The orders keep coming in, and we’re just a small mom-and-pop publisher.”

For Mattie, who was in New York to appear on “Good Morning America,” the Hyperion deal marks another turn in a life marked by pain. Since he was released in July from a three-month stay at Children’s Hospital in Washington, he’s been busy.

He’s gone on “The Oprah Winfrey Show” and appeared on Jerry Lewis’ Labor Day telethon. He’s had book signings around the Washington area. He eagerly signed books at Hooters in Baltimore, where scantily dressed women served buffalo wings in the background.

The poems, accompanied by Mattie’s own illustrations, are uncomplicated, even dreamy. He writes about God and trees and teddy bears and flowers. After the Sept. 11 attacks, Mattie wrote one poem about the dark day and another imploring people to stop judging one another.

Cheryl Barnes, who brought in volunteers to help fill book orders, says some purchasers told her of being suicidal until they read the boy’s poems.

“So many people have called and written to say Mattie changed their lives, that his poems of prayer and hope and believing moved them,” says Barnes, herself a children’s author. “Really, I do believe that Mattie’s story would not have happened were it not for the grace of God. How else do you explain what’s happening here?”

Even people who know Mattie are at a loss to explain his success. According to Barnes, 200,000 copies of “Heartsongs” and 280,000 of its sequel have been sold. With Hyperion on board, “Heartsongs” could easily see sales in the millions, says Barnes, whose company is barely managing the hundreds of calls it receives each week for Mattie’s books.

Even more sell at his book signings, like the one in Alexandria.

Mattie is looking good. The color has returned to his face. He seems stronger, bobbing up and down in his wheelchair, jostling with his friends.

As he does before all readings, Mattie explains to his audience how he came to be in a wheelchair and permanently hooked up to a ventilator that “keeps me alive.”

He talks, too, of how his mother discovered his gift for writing when he was just 3.

“At first I didn’t know they were poems,” Mattie says, giggling. “I was just writing. I thought it was a beautiful way to express your feelings, happy or sad.”

His introduction done, he launches into his first poem, “Making Real Sense of the Senses.” A microphone amplifies his soft voice:

Our eyes are for looking at things,

But they are also for crying

When we are very happy or very sad.

Our ears are for listening,

But so are our hearts.

Our noses are for smelling food,

But also the wind and the grass and

If we try very hard, butterflies....

Suddenly Mattie stops. The smile that had graced his slight face is gone. He looks panicky. The long tracheotomy tube that moves oxygen from the ventilator attached to his wheelchair doesn’t feel right. He mouths a few words to his mother, Jeni Stepanek, who’s sitting a few rows back:

“I need suction,” he says.

“Can you go on?” she mouths back. “Can you try and cough?”

Mattie says he can’t.

His mother, who suffers from a form of the same illness--dysautonomic mitochondrial myopathy--and also uses a wheelchair, makes her way to the front of the room to help her son. She apologizes to the crowd, then slides Mattie’s wheelchair around.

They flip a switch and a buzzing sound can be heard, then a swirling noise as a machine suctions the mucus that has collected in his tube. Mattie coughs. A few men and women in the audience turn their heads, some out of respect, others out of discomfort.

The buzzing stops. Mattie turns his wheelchair back around and resumes reading poems about war and peace and patience.

To Mattie and his mom the episode is normal, but to his audience it’s a reminder that no matter how well he looks, this is a sick child.

Mattie’s physician, Robert Fink, chairman of allergy, pulmonary and sleep medicine at Children’s Hospital, also treated Mattie’s older brother and two sisters, who all died of the same disease.

Fink says he’s not surprised by Mattie’s whirlwind success but harbors no illusions about his prognosis. “His underlying condition has not changed, but he is much more stable,” says Fink, adding that Mattie could live for days or years. “All I can say is he’s going to have ups and downs. We only hope the downs don’t go so far down that we can’t pull him back up.”