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CNN Larry King Live
Interview With Mattie Stepanek
Aired April 17, 2002 - 21:00 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
LARRY KING, HOST: Tonight, an hour that could well change your life. It changed mine. At a time when the world is at war, this 11- year-old boy makes more sense than a lot of world leaders. Best- selling poet Mattie Stepanek fights for his life against an incurable disease and inspiring millions with a message of hope. And then later, singer Billy Gilman. They're all next on LARRY KING LIVE.
What a great pleasure to welcome to LARRY KING LIVE tonight, our special guest is Mattie Stepanek. Mattie is the 11-year-old best- selling poet. He's the 2002 national goodwill ambassador for the Muscular Dystrophy Association. His latest book of poems, I have it right here in my hands, is "Hope Through Heartsongs." He's appeared on "Oprah" and other programs. His real name is Matthew Joseph Thaddeus Stepanek. We like to call him Mattie. He's 11 years old. And what is it -- what is your illness?
MATTIE STEPANEK, 11-YEAR-OLD POET: It's a rare form of muscular dystrophy called disautonomic myocondrial myopathy. And it's non- curable. There's not even a known treatment. And I have three siblings, two brothers and one sister, only one of which I know that died from the same thing I have during young childhood. And my mom has the adult onset form of it. She had it, but she didn't know. It didn't really hurt her very badly until about 10 or 15 years ago.
KING: How about your dad?
STEPANEK: We're divorced from my father because he did some mean and scary things to us.
KING: You don't see him?
STEPANEK: I don't like to point fingers or talk about him.
KING: You don't see him?
STEPANEK: No.
KING: You were born with this?
STEPANEK: Yes.
KING: So have you had to have this -- explain what it is you have around, the apparatus? STEPANEK: On my neck, I have a trach, which goes into my lungs. It's a little white thing. And what's breathing for me is a ventilator and there's two main pipes, inhale/exhale. And I have apnea. I forget to breathe. And I have disonomia (ph), which means my body forgets to digest some kinds of foods like some sugars and fats. It forgets to pulse oxygen and forgets to do a lot of stuff a lot of the time.
KING: And the machine does it for it?
STEPANEK: Yes. It helps it remember to breathe. And I would not be alive without my mother or my faithful friends and doctors who take such good care of me all the time.
KING: What about life expectancy, Mattie?
STEPANEK: The doctors didn't think I would live one day, but I did. So they said, OK, he's not going to last six months. I did. Then they said, OK, we're drawing the line at 2-years-old, three years, or he's going to die by then, and you might as well let him go now. And my mom said, no. I'm going to train this spirit. So I lived to be two, and they said, OK, five, five, five is it. Then I lived to be five, and then they said 10. And here I am, an 11-year- old. So now they're saying teens or some time as a young adult, but I plan to be 101.
KING: How old were your siblings when they died?
STEPANEK: The oldest, Katie (ph), was born in 1985. She would be 15 or 16 now. She died when she was about two and a half or three, and I didn't get to meet her. The second one was Stevie. He was born in '87. And he only lived to be six months. And I didn't know him either. Jamie was born in 1989. And I knew him, and we had such a brotherly bond. He lived to be two, three, maybe even three and a half. And he died when I was two or three. And it was very hard for me.
KING: I'll bet.
STEPANEK: And I sort of didn't understand death. I wasn't expecting it. And I knew to say, my brother Jamie died. But I didn't know what it meant. And that's mainly how my poetry started.
KING: Yes, tell me about that.
STEPANEK: Well, I didn't even know it was poetry at first. I was just talking and playing. And 95, maybe even 99 percent of my early works were about Jamie's death. And then I learned it's poetry, my mom told me. And I asked her to write it down for me. And I said, wow, this is a way I can express my feelings, in a way that I can cope with this hard life and others can understand it.
KING: This came to you naturally?
STEPANEK: Yes.
KING: You never took writing lessons?
STEPANEK: No.
KING: So you are what might be called a natural poet?
STEPANEK: Yes.
KING: You like the form?
STEPANEK: Yes.
KING: Do you write all the time?
STEPANEK: I say to people, they say, do you write better happy days, sad days. I say, anytime I'm not sleeping. And I'm not just a poet. I also write journals. I write essays and my poetry about...
KING: You're a writer?
STEPANEK: Mm-hmm. Yes. And my poetry's about all kinds of different things. It began about Jamie and then it evolved into things like nature, friendships, challenges, hopes. And the big theme is peace. And I talk about peace in many different ways so that everyone likes it, it appeals to all people and so that everyone understands it.
KING: What do we mean by heartsongs?
STEPANEK: A heartsong is your inner beauty. It's your inner message. It's what you feel you want to do. In my case, my heartsong is to hear my heartsong and help others to hear theirs as well. And teaching heartsongs does not mean, this is my heartsong, now it is yours. Everyone has a different heartsong and the differences are what make them beautiful. And we are a mosaic of gifts. And we need to choose to put those pieces together, not spread them apart.
KING: Do you ever get down?
STEPANEK: Oh, yes. Sometimes I say, why me? Why have I had such a hard life? Why have my siblings died? Why does it not go away? And then I think again, why not me? Better me than a kid who already has stress on his life or better me than a baby who wouldn't understand it and who has a better chance of hurting more. So I think why me, and then I think why not me?
KING: Mattie Stepanek, an extraordinary young man. Wise enough to wear suspenders, I might add. You're watching LARRY KING LIVE. And as we go to break, we sent a film crew to show you a typical day in the life of Mattie. Watch.
(BEGIN VIDEO CLIP)
UNIDENTIFIED FEMALE: This is what really happens. We had a problem with his vent last week. It has been fixed. And they're recalling one vent, fixing it.
STEPANEK: Yes! There go your shields, bub.
I love you, mom.
UNIDENTIFIED FEMALE: I love you, too.
STEPANEK: And I'm going to go (UNINTELLIGIBLE).
UNIDENTIFIED FEMALE: OK. You've got a full tank.
STEPANEK: Want me to turn it off?
UNIDENTIFIED FEMALE: I would love for you to turn it off, please.
STEPANEK: Darn it.
UNIDENTIFIED FEMALE: I'm sorry. It's the government again.
STEPANEK: It's going to be loud.
UNIDENTIFIED FEMALE: We fill two. He runs off of two at a time. So we put two on and then we fill the other two, plus we have tanks in the car so if we run out, we can fill again.
Unplug. And we're going to be late.
STEPANEK: I would like to show you a friend of mine that I got. He's in my Easter basket, and I named -- I'll tell you what I named him in a minute. Isn't he so cute? Isn't he the most adorable thing? I named him the killer bunny. You know why?
(END VIDEO CLIP)
(COMMERCIAL BREAK)
(BEGIN VIDEO CLIP)
UNIDENTIFIED FEMALE: Bye.
STEPANEK: Bye-bye.
UNIDENTIFIED FEMALE: Have lunch, read for a little bit, then you can socialize. You know, I can tell you where I think he goes. But see, technically, I'm in here, so I don't really know.
STEPANEK: You know where they keep the coffee powder stuff?
UNIDENTIFIED FEMALE: The coffee?
STEPANEK: Yes.
UNIDENTIFIED FEMALE: It should be here.
STEPANEK: My mom's office is in here. I wonder if it's still her office.
Exhibit A, Spinasaurus Edipticus (ph).
UNIDENTIFIED FEMALE: (UNINTELLIGIBLE).
STEPANEK: That angle, that angle and that angle.
(END VIDEO CLIP)
KING: We're back with Mattie Stepanek, "New York Times" best- selling poet and author. We'll be hearing some of his work. He'll read it himself. I may even read one or two because they're written so well. You have had to face death, though, right? There were times when it looked like you bought the bullet?
STEPANEK: Yes.
KING: Last July, I'm told.
STEPANEK: Yes.
KING: How do you deal with it at that minute?
STEPANEK: I always am careful to look at my glass half full because if you look at your glass half empty, it might as well be empty all the way. And last year I was very sick, and it started in the winter. Before that year, my oxygen was not circulating correctly, and my fingers, my toes, my lips were all popping open and bleeding. I used to joke that I was a preaching zombie and I end up going into the hospital for a trach. My mom was talking to a doctor saying what to do about it.
And I said, I made a decision. I think it's time for me to get my trach back in because I used to have it when I was little. And it came out when I was two or three. And my mom and the doctor were shocked, but when they thought about it, they knew it was the right choice.
So everyone -- they put in the trach and everyone thought and knew it would make everything better. But something else happened. Now my fingers and lips were all popping open and the same thing happened to the inside of my lungs. The doctors called it a completely denuded or eroded airway. And they said he could die any day. One day it is just going to melt. And that...
KING: Were you scared?
STEPANEK: Oh, yes. Anyone would be scared in that situation. And they said I had a range of three days to three weeks.
KING: What pulled you through?
STEPANEK: The good physical treatment and emotional treatment. During that 5 1/2 months, those doctors treated me like their friend. (UNINTELLIGIBLE) for 5 1/2 months, they would help me get through. They'd teach me. They'd pray with me. They'd celebrate life with me. They at least laugh at my practical jokes.
KING: You're a practical joker.
STEPANEK: Oh, yes.
KING: You do -- you like to...
STEPANEK: Mm-hmm. The most classic one...
KING: ... put little bugs in the bed?
STEPANEK: Oh, no. I did worse. My most classic one was the remote-control fart machine.
KING: The remote-controlled fart machine?
STEPANEK: Yes. People asked me, Mattie, tell us something original that no one would expect from you. I said, I have a remote- control fart machine, and that's the truth.
KING: You have such a machine?
STEPANEK: Yes.
KING: You hit a button and it propels it to someone else?
STEPANEK: Yes.
KING: This causes humor?
STEPANEK: Yes. It can go up to 50 feet, I think, and I have a lot of fun with it.
KING: How are you schooled?
STEPANEK: I home school and my mom teaches me, and she does this great job, not only teaching me school, but getting me through life. I could not have lasted anytime without my mom. She's just the best thing that ever happened to me.
KING: And we're going to meet her later.
STEPANEK: Yes.
KING: How were you published? How did you get your first book? How did that happen?
STEPANEK: I had three wishes. To get my books published, to help spread my message of peace, to meet Jimmy Carter, my hero, and make sure I was on the right track as a peacemaker. And to be on the Oprah Winfrey show so that she could help me spread my message of peace. So as a dying wish, they had a little publishing company do 200 books to hand out to friends.
KING: Was this through the Make-A-Wish Foundation.
STEPANEK: Yes, the Make-A-Wish and the hospital.
KING: So they published 200 books?
STEPANEK: Mm-hmm, to hand out to friends. And as they were photocopying these 200 books, they looked and they said, wow, this kid is a writer. And they helped me get my start. And then we switched to Hyperion Disney.
KING: Disney?
STEPANEK: Yes.
KING: How many have you published now?
STEPANEK: I have published three now. That first one, the paperback, "Heartsongs" was not supposed to be out in the like the real trilogy sort of thing. And later this year, they're coming out with a hardcover of "Heartsongs." And it has more illustrations and more poems in it.
KING: Were you surprised that it did so well?
STEPANEK: Oh, I was surprised and I was so excited. And when we got home -- when I got home from the hospital for good, the phone rang upstairs and the kid answers it upstairs, I live with a family. The mom, she's a nurse, so good to us. So one of my friends...
KING: Your mother and you live with the family?
STEPANEK: Mm-hmm. And so he answers the phone and he says, hello, who is this calling please? Uncle Winfrey? I don't think we have an Uncle Winfrey. And then the woman who lives upstairs, when she heard Winfrey, she says she literally jumped off the couch like a cat bounces in water and grabbed the phone and said, hello. Oh, my gosh. And we heard her scream upstairs. And she comes running downstairs and she said, pick up our phone. And Oprah Winfrey had called us.
KING: And you were invited on the show?
STEPANEK: Yes.
KING: And what was that like?
STEPANEK: It was amazing. And when I walked through those doors and saw all the people cheering for me and Oprah waiting for me, I knew I had survived the hospital and I was a peacemaker. And she's a wonderful person.
KING: She's an old friend. We'll be right back with Mattie Stepanek. We're going to hear some of his work right after this.
(BEGIN VIDEO CLIP, "OPRAH")
STEPANEK: People now are fighting over how our heartsongs are different, but they don't need to be the same.
OPRAH WINFREY, HOST: Our heartsongs don't need to be the same, because everybody has different ones.
STEPANEK: Yes. And that's the beauty. We are a mosaic of gifts and each of us has our inner beauty, no matter how we look. I mean, you're very beautiful, I know. But it's our inner beauty.
(END VIDEO CLIP)
(COMMERCIAL BREAK)
(BEGIN VIDEO CLIP)
STEPANEK: One day I went into the room of my mother, Ms. Lillian Carter. She was lying down on her bed in her room. I propped my feet up on her bed and I said, Miss Lillian, dear mommy, I want to run for president of the United States of America.
UNIDENTIFIED FEMALE: What did she say?
STEPANEK: She looked at me for a long time. And then finally she said, Jimmy, get your feet off my bed.
(END VIDEO CLIP)
KING: By the way, we are reminded, the Make-A-Wish Foundation turned Mattie down, his request. And it was the Children's National Medical Center that came through with that request. Did you meet Jimmy Carter?
STEPANEK: Yes, I did.
KING: What were the circumstances?
STEPANEK: It was on "Good Morning America." It was a total surprise. I was not expecting it. They had so carefully planned out -- the TV in the green room was labeled out of order, even though it wasn't. So I went to turn it on and see Jimmy Carter in the studio right next to me. And I even accidentally passed him on the way to the bathroom and I didn't even think to look up.
So they were talking to me. They were interviewing me. And they said, we hear your hero is Jimmy Carter. And I said, yes. And they said, would you like to meet him? And I said, sure. And they said, would you like to meet him today? And I said shrugged and said, sure, anyday. And they said, well, that's good because he's in the audience right there. And he comes walking through. And I could not -- even I could not believe the surprise. I wanted to like pinch myself to make sure I was awake. And the amazing thing is, as they shut off my (UNINTELLIGIBLE) and they went to the commercial break, Jimmy Carter and I sat there for 45 and a half minutes talking. And now I'm on a first name basis with him and Oprah Winfrey.
KING: Why do admire him -- and now Larry King even. You can call me any time.
STEPANEK: Thank you.
KING: Why did you admire Carter so much?
STEPANEK: Jimmy Carter is my hero because he is a humble peacemaker. He will write a book. He'll solve a problem. He'll build a house.
KING: He'll go anywhere.
STEPANEK: He'll go anywhere, and instead of coming home bragging, saying look at me or anyone else they might help, he'll say thank you for admiring me. And he is such a wonderful, charitable man.
KING: Do you have now other wishes?
STEPANEK: I wish to maintain the same goals. I want to keep in touch with Oprah and Jimmy and you.
KING: Thank you.
STEPANEK: And I want to keep writing and spreading peace. And I also one day hope to be a daddy.
KING: Is that possible?
STEPANEK: Yes. My children, if I have any, will not inherit this disease. The man does not carry it.
KING: It is carried through the woman?
STEPANEK: Yes.
KING: All right. Pick a poem. Let's start.
STEPANEK: I'm going to start off with one from the first original one, "Hope Through" -- I mean, sorry, "Heartsongs."
KING: This was the original. This was the paperback which will be a hardcover this year.
STEPANEK: Yes.
KING: OK.
STEPANEK: "Making Real Sense of the Senses": Our eyes are for looking at things, but they're 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. Our hands are for feeling, but also for hugging and touching so gently. Our mouths and tongues for tasting, but also for saying words like I love you and thank you God for all of these things.
KING: You just sit there -- do you write quickly?
STEPANEK: Yes. And I wrote that one when I was about five or six, when I was in kindergarten and we were studying about the five senses.
KING: That's sheer brilliant.
STEPANEK: Now I'm going to read a couple from the "Journey Through Heartsongs" book.
KING: The first hardcover.
STEPANEK: The second one -- yes, the first hardcover.
"On Growing Up."
KING: That's the title?
STEPANEK: Yes. Well, actually, it's part five. There's like a whole series of "On Growing Up" poems.
KING: Growing up.
STEPANEK: "On Growing Up, Part Five": We're growing up. We're many colors of skin. We're many languages. We're many ages and sizes. We are many countries, but we are one earth. We each have one heart. We each have one life. We're growing up together, so we must each join our hearts and lives together and live as one family.
KING: Do you self-edit? Are you sometimes you write them and say, I don't like this and I'm not going to submit it?
STEPANEK: I don't usually change the poem. I usually check for grammar and spelling.
"A New Hope": I need a hope, a new hope, a hope that reaches for the stars and that does not end in violence or war. A hope that makes peace on our earth and that does not create evil in the world. A hope that finds cures for all diseases and that does not make people hurt in their bodies, in their hearts or most of all, in their spirits.
I need a hope, a new hope, a hope that inspires me to live and to make all these things happen so that the whole world can have a new hope, too.
KING: Where were you on September 11?
STEPANEK: I was in my room. And I'm about to read a few poems that I wrote on that day. And I was doing...
KING: You wrote them that day?
STEPANEK: I was home-schooling with my mom. She was teaching me math. And I remember it. And I can even tell you what I was wearing. I was wearing a red Maryland shirt. And Lynn Motz (ph) came running down the stairs and she said turn on the TV. Turn on the news right now. And then she ran back upstairs.
And we turned it on two minutes before the second plane crashed. And when we saw the second plane crash, my mom thought it was a replay. And I said no, because the building was still on fire. And it was horrifying. It was so sad. And I lost firefighter friends. I sat there for hours on the television after the building collapsed and before the building collapsed looking for firefighters, my friend.
KING: You knew a firefighter from New York?
STEPANEK: I had just spent a couple days at a fundraiser with the MDA, Muscular Dystrophy Association, with New York firefighters who were a lot of fun. And I was looking and I said, OK, he's OK. He's OK. And there were a few that I couldn't find. And they have now been proclaimed dead.
KING: The impact on you had to be enormous for a kid who wants peace so much.
STEPANEK: Yes.
KING: Didn't that make you pessimistic, that day?
STEPANEK: It didn't make me pessimistic. I was angry. I mean, I wasn't throwing things around, but I was certainly angry. I thought how could someone do this? This is so terrible.
And what are we fighting over? Land, money. They don't really matter. And we're also fighting over religion. And religion -- there's always one basic ideal. We're trying to become better people. And there is something greater than us, greater than the here and now. And there are many names for that. And it doesn't matter how we try to become a better person.
KING: Mattie Stepanek, his newest book is "Hope Through Heartsongs" More with Mattie, and then in a little while, we'll meet his mother. Don't go away.
(COMMERCIAL BREAK)
(BEGIN VIDEO CLIP)
STEPANEK: As you all know, my name is Mattie Stepanek. I would like to thank you all so much for coming tonight.
UNIDENTIFIED FEMALE: (UNINTELLIGIBLE).
STEPANEK: I'm glad you like it. Thanks for coming tonight.
UNIDENTIFIED FEMALE: Oh, I had a wonderful time. You know, it is not this, you know, edited poetry, that it's just this really fresh movement, just truly something powerful.
STEPANEK: How are you tonight?
UNIDENTIFIED FEMALE: I'm fine. Just much better for seeing you. You're terrific.
UNIDENTIFIED FEMALE: I felt really touched. Mattie just has a real sweet spirit about him. UNIDENTIFIED MALE: Three-hour drive just to meet Mattie. And on Sunday mornings with various great theologians being mentioned in the sermon, Mattie gets his place as well.
(END VIDEO CLIP)
KING: Mattie Stepanek. OK, the poem you wrote on September 11.
STEPANEK: I wrote three.
KING: Three.
STEPANEK: And I'm going to start out with the one that I wrote as I watched it happening, the first one I wrote. And this was when I was in total shock and fear. "Attack on America": A wild bomb will consume morning, evening and all people, showering dirt to burn man's skin. That was the first one I wrote.
KING: You're genius, Mattie. Go ahead.
STEPANEK: And this one I'm about to read now is the one I wrote later when I was sad. I was still terrified and I was also -- it was when I was very upset, most angry. "9/11/2001": It was a dark day in America. There was no amazing grace. Freedom did not ring. Tragedy attacked sky high. Fiery terror reigned. Structures collapsed, red with blood, white with ash, and out of the sky blue. As children trust elders, citizens find faith in leaders. But all were blinded, shocked by the blasts, undefiable outrage, undeniable outpouring of support, even prayer, or at least moments of silence.
Church and state cannot be separated. A horrific blasting of events with too few happy endings. Can the children sleep safely in their beds tonight? Can the citizens ever rest assured of national security again? God, please bless America and the rest of our earthly home.
KING: Want to do the third one, too?
STEPANEK: Yes.
KING: Go ahead.
STEPANEK: The third one was the prayer that I wrote that night.
KING: A prayer.
STEPANEK: Yes. "For Our World": We need to stop, just stop, stop for a moment before anybody says or does anything that may hurt anyone else. We need be silent, just silent, silent for a moment before we forever lose the blessing of songs that grow in our hearts. We need to notice, just notice, notice for a moment before the future slips away into ashes and dust of humility. Stop, be silent and notice.
In so many ways, we are the same. Our differences are unique treasures. We have, we are a mosaic of gifts to nurture, to offer, to accept. We need to be, just be, be for a moment kind and gentle, innocent and trusting, like children or lambs, never judging or vengeful, like the judging and vengeful. And now let us pray, differently yet together, before there is no earth, no life, no chance for peace.
KING: Are you also a kid? I mean, do you like Harry Potter?
STEPANEK: Oh, I love Harry Potter, "Lord of The Rings."
KING: In fact, you knocked the book down the best-seller list, didn't you? You came on the best-seller list and knocked one of Harry Potter's books down.
STEPANEK: Mm-hmm. I knocked my favorite one off. When I saw that, I thought -- I mean, I was so excited. But my mom said, what's up? And for three seconds, I was mourning, I knocked "Harry Potter and the Goblet of Fire" off the list.
KING: Wow! Do you like the "Lord of the Rings?"
STEPANEK: Yes. And the movie is -- I'm not criticizing many movies but it followed it. They did such a great job.
KING: How about "Shrek?"
STEPANEK: "Shrek" was hilarious.
KING: "Shrek" was the best.
STEPANEK: I'm in touch with Mike Myers. And we talk to each other.
KING: With who?
STEPANEK: Mike Myers, the voice of "Shrek." We did Shrek impressions and Austin Powers impressions over the phone.
KING: You do one?
STEPANEK: Yeah, baby, I can.
KING: Michael J. Fox was on this show recently. You know he has Parkinson's disease. And he said he looks at it in a sense as a gift, that -- it's a gift to him to make him think about others, to change his perspective on the world. How do you view your disease?
STEPANEK: I think that, even though it's sad and some people think why would God do this? I think it was meant to be. God is not a toy -- when you pray to God doesn't work like OK, dear God, please help me to win this game and you win. God works in so many ways. Some are mysterious. Some are plain. And some you question why, but I think that I was meant to have this.
KING: So you never said, I don't believe in you?
STEPANEK: No. I have never ever said -- I've never quit on God. KING: Or ever thought God quit on you.
STEPANEK: No.
KING: You got a black belt in karate?
STEPANEK: Yes.
KING: How did you do that?
STEPANEK: Well, it was before I had the trach and it was a whole lot of fun because you make friends. And it was called hapkido. And it was kind of a mix of everything. It taught you respect, like manners. And it taught you to be the defender, not the attacker. And I thought -- I had to flip around. I did kicks. I broke boards. I did weapons. My best weapon was the staff.
KING: Wow.
Let me just read a poem quickly and then we'll meet his mother. This was written in 1993, infant, called "Shared Tears": Sometimes I get sad and then I have tears on my face. They roll out of my eyes, down onto my cheeks and off of my chin. Sometimes my Mommy takes one of my tears on her finger and kisses it and puts it onto her face. My Mommy loves me. When I'm hurt or very sad, my Mommy is hurt or very sad, too.
We'll meet Mommy right after this. Don't go away.
(BEGIN VIDEO CLIP)
STEPANEK: Thursday, April 4, 2002. You are the best. You are truly great. You teach the world prayer to let go of hate. We are so blessed, especially me. We learn to love and set our hearts free. Mommy loves Mattie. She does.
UNIDENTIFIED MALE: That's from your mom.
STEPANEK: She does that sometimes when I pack a lunch.
(END VIDEO CLIP)
(COMMERCIAL BREAK)
(BEGIN VIDEO CLIP)
JENI STEPANEK, MATTIE'S MOTHER: I said I actually do love having Mattie around, just about all the time.
M. STEPANEK: No, you said all the time.
J. STEPANEK: No, I said 99.9 percent. Do you want me around 100 percent of the time?
M. STEPANEK: No. J. STEPANEK: I want him around most of the time. I respect his privacy and I respect my privacy. And I respect time apart, but I love being with him. He's a lot of fun.
(END VIDEO CLIP)
KING: We continue with Mattie Stepanek, poet, award-winning poet, best-selling poet. National goodwill ambassador for the Muscular Dystrophy Association. His newest book is "Hope Through Heartsongs." And we're now joined by his mother, Jeni, who developed M.D., at what age?
J. STEPANEK: I was diagnosed when I was, I think about 32. And I had already had all four of my children. I had no idea that I was a carrier or that I would have the adult onset until I had had all four.
KING: (UNINTELLIGIBLE).
J. STEPANEK: Yes, but my children were misdiagnosed early on because this is a disease that, during the 1980's, they really didn't know much about this disease. So with the misdiagnosis came a misprognosis. So I was told my daughter was a fluke of nature. And then I was told it was genetic but recessive. So I really didn't know until I had four children what was really going on.
KING: How did you handle the loss of three?
J. STEPANEK: I honestly don't know.
KING: Without a husband?
J. STEPANEK: No. I was married -- I was divorced in 1997. So I had already buried all three of my children and Mattie was very sick. I often wonder how I got through that because it was so devastating and I was so filled with despair. I know that having a religion helped me because there were a lot of rituals that kept me involved, kept me getting up every day and doing something.
KING: Catholic?
J. STEPANEK: I'm Catholic, yes. Just having something to do, something to fill time. I think the hardest time was when I was between children. The first two were misdiagnosed, and I was told it probably wouldn't happen again. And then I had two more. And between the two children, there's nothing worse than an empty lap because your child's died, not because you've set them free to go to college or have a career.
KING: How do you explain Mattie? You have a business card that says Mattie's mother.
J. STEPANEK: Mattie's mom, yes.
KING: How do you explain him to yourself or to...
J. STEPANEK: Well, you know, I think his just being alive is a combination of really good medical care and hindsight. Being the youngest even though he's actually the sickest of my four children.
KING: He's the sickest?
J. STEPANEK: He was the sickest the whole way through. He's always been the sickest. But he's lived longer partly because of a better understanding of what's going on. There's no treatment except for to maintain and treat the symptoms. But they understand that more.
KING: There's no drug he takes?
J. STEPANEK: No, there's nothing that will cure this. His spirituality, though -- I think he was born with a gift and I think he's had some wonderful nurturing, beautiful opportunities. I think of a child that has the capability of being very verbal and then he has life experiences that are not typical for a child. I mean, most children ages three to five don't lose a brother, see pictures of two siblings that you never got to meet but you know they were yours, have a mother that suddenly goes in a wheelchair, just all the things that he's been through and then facing his own mortality. And I guess he's got both the gift and the will to use the gift and nurture that gift in a positive way.
KING: Wherever that comes from.
J. STEPANEK: Yes.
KING: You got quite a mom here, huh, Mattie?
M. STEPANEK: Oh, yes.
KING: Do you fear losing him?
M. STEPANEK: Yes. I fear losing her.
J. STEPANEK: It's very hard. Nobody knows how long he'll live. The doctor that knows him best has said it wouldn't surprise him to get a phone call on any given day to say I'm sorry, Mattie Stepanek just died. He said he wouldn't be surprised, but he said he's not expecting it. If we stay two steps ahead of Mattie and treat his symptoms before the symptoms get out of hand, and we don't let him get too far down. Like last year, he caught us by surprise. We were not two steps ahead of him. We were only one step ahead. And once you lose that one step, you're digging him out of the grave.
KING: Every day is an adventure.
J. STEPANEK: Everyday is an adventure. He goes -- he either looks like this or you've got a problem. If one piece of equipment malfunctions, an oxygen tank malfunctions...
KING: So, he could have been not able to be with us tonight?
J. STEPANEK: Yes, yes.
KING: Do you know Jerry Lewis? M. STEPANEK: Yes. And I'm meeting him in person this year and I met...
KING: You going to the telethon?
M. STEPANEK: Yes. And I met him over satellite in the local Baltimore MDA telethon last year. And I'm one of Jerry's Kids.
KING: Your mom probably lives with more fear than you do, right? She's lost three.
M. STEPANEK: Yes. My mom and I each have fears. Some of them are different, some of them are the same. And it's hard to say who lives with more. One of us has already experienced death and the other one of us has experienced it, but not family. Last year in the hospital, children died and sometimes I would have to watch and sometimes I'd pull the curtain, but that was even worse because I'd hear it, and I'd have to imagine what was going on. It is hard to distract yourself.
KING: Mattie, we're going to have you on many times. You're going to be a regular on this show. And you keep going like you do, you're going to host this show. Thank you.
J. STEPANEK: Thank you very much.
KING: Thank you, Jeni. And thank you, Mattie. Mattie Stepanek, his mother, Jeni Stepanek. His new book, "Hope Through Heartsongs", published by Hyperion.
We'll take a break. When we come back, another sensational young lad, 13-year-old Billy Gilman. What a voice he has. And he's going to sing "My Time On Earth." That's next. Don't go away.
(COMMERCIAL BREAK)
KING: We're going to close our show tonight with a return visit with one of my main men, Billy Gilman. Billy's an extraordinary talent. He's only 13 years old. He is going to be 14 soon.
He's working on a new album. He'll be on the soundtrack of "Stuart Little 2" when that movie comes out. He's part of a non- profit field trip for kids program, Go For It Roadshow. He's just read for the film production of "Peter Pan." He's going to be a presenter at the American Country Music Awards. He's going to sing "My Time On Earth" from "Dare to Dream." You're a hit already.
BILLY GILMAN, MUSICIAN: Thank you. Good to be back.
KING: Tell me about this song, "My Time on Earth."
GILMAN: "My Time On Earth," it is a great song. And it is really impromptu of what's going on in the world right now. So everyone can relate to it. It is a great song. It's like God's alive and well.
KING: Billy, you're going to be our superstar.
GILMAN: Thank you. It's great to be back.
KING: You're in for a treat as we close things out tonight, folks. Here is William -- we call him Billy -- Billy Gilman. Go get 'em.
(MUSIC, BILLY GILMAN, "MY TIME ON EARTH")
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