Disabled Child Keeps Going

(CBS)  As part of our latest American Hero story, CBS News Correspondent Tracy Smith reported on an extraordinary child, Mattie Stepanek, who has crammed more into 13 years on earth than most people will do in their entire lifetimes.

Stepanek isn't in the best of health. He was supposed to be part of Jerry Lewis's MD Telethon, but he had to miss it because he was not well enough to travel. And he was scheduled to be at the hospital to try a new treatment.

In December 1985, Jeni Stepanek gave birth to her first child. Her initial flood of joy quickly turned to horror. Baby Katie was diagnosed with a rare and especially ugly strain of muscular dystrophy.

"I was told she was a fluke of nature," Jeni said. "Million-to-one odds of this happening. They didn't even know why she kept trying to die."

Katie lived less than two years. But the Stepanek family's anguish was just beginning.

"I was seven months pregnant with my second child when Katie died," Jeni said. "And then Stevie was born a month later. And he had the same symptoms."

Within six months, Jeni watched her second child wither and die. But doctors reassured her that a third baby would likely be normal.

And the Stepaneks did try to have a third child.

"Had a little boy named Jamie in 1989," Jeni said. "And he had the exact same thing. And I just decided, 'We're not having any more biological children. We may adopt. But I'm not going to keep bringing children into the world to suffer and die.' But evidently Mattie's a spirit that was meant to be."

Mattie Stepanek was born 13 years ago with the same disease that killed his sister and brothers. He was medically fragile. But to Jeni, he was an unintended miracle.

Today, Mattie is living with muscular dystrophy, long after doctors gave up on him.

"The doctor said, 'He can't last a week.' And I did," Mattie said. And they said, 'There's no way this kid's going to last a month.' And I did. And so they said, 'Two years. He's not going to make it.' Two years. 'Five years. He can't do that.' I lived to be five years. 'He's never going to hit double digits.' And here I am, a new teenager."

A new teen that is wise beyond his years.

Mattie is a poet and a bona fide celebrity. He made an appearance on Oprah Winfrey's television show. He's had five books of his poetry on the New York Times best seller list. Mattie has been interviewed more times than he can count. And, he's for real. Mattie demonstrated his gift for writing poems when he penned one about his brother.

"When I look at pictures and imagine what he would be like now, a dozen years old, I wish I could have saved him from agelessness. But then I remember, it happened anyway," he recited.

For all of his talent and fame, it's not easy being Mattie. He's confined to a wheelchair and tethered to life-support equipment. Most days, it's a chore for him just to breathe.

That doesn't mean that life's no fun. Most of the time, he's quite the prankster.

His spirit is a lifesaver for Jeni, who is confined to a wheelchair herself after developing an adult strain of the disease. She draws strength from her son even as she keeps him alive.

"As the one that's looking at everything at the same time, I feel a huge responsibility," Jeni said. "I worry a lot about losing him, 'cause he's my life. He really is."

Mattie knows he has accomplished a lot.

"I've gotten books published. I've met famous people that are very nice," he recollected. "I look back and I say, 'Wow. Thank you, God, for giving me this gift. And thank you for helping me to keep going.'"