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CNN LARRY KING LIVE

Look back at Late Mattie Stepanek

Aired June 22, 2004 - 21:00   ET

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.


LARRY KING, HOST: Tonight, remember a remarkable young man, 13- year-old Mattie Stepanek. Poet, peace maker, inspiration has lost his brave fight against an uncurable disease. His words and spirit live on next on a very special LARRY KING LIVE.
KING: Thanks for joining us. Every once in awhile, life introduces you to somebody who helps put everything else into perspective. Someone who makes you realize that your problems are not such a big deal. Someone who makes you want to count your blessings and try to do your best every minute of every day. Mattie Stepanek was one of those rare somebodies and he died early this morning. He would have been 14-years-old next month. Mattie was an incredible kid, gifted and gutsy, and a very good friend to this program. I first sat down with him in September of 2002. The show was a gift.

(BEGIN VIDEOTAPE)

KING: Is this your first time on the West Coast?

MATTIE STEPANEK, 12-YEAR-OLD POET, HAS INCURABLE DISEASE: On the West Coast, yes.

KING: Have you flown a lot?

M. STEPANEK: No, we've driven a lot. We drove straight from Maryland to Las Vegas and to L.A., and it's great. Driving has been great. We didn't do sightseeing until we hit the Painted Desert, because we wanted to get near where we were.

KING: Oh, you can't fly, huh?

M. STEPANEK: We can fly.

KING: But you didn't?

M. STEPANEK: No, because our arms would have gotten tired very quickly.

KING: Mattie, you know Mattie, you're a smart ass kid. You're a great kid. But you've become famous, and it's very good to see you. How are you feeling, most of all?

M. STEPANEK: I'm feeling great. There have been a few health problems. But really, I am doing much better. You know, and I'm really excited to be here. KING: We are excited to have you. I noticed that in the new book, Jerry Lewis wrote the foreword.

M. STEPANEK: Yes.

KING: What an honor that must be?

M. STEPANEK: It was.

KING: Have you met Jerry?

M. STEPANEK: Actually, I did in Las Vegas. It was so great seeing him. He was very nice. And it was great meeting him. We talked for a few moments, and we hugged. So I got to know him before the telethon.

KING: Now, to people that may not know you, and you've become world-famous with this show all over the world, "Oprah," "Good Morning America," Jimmy Carter, your favorite person, your thoughts for peace and everything. But briefly, let's go over some things that the audience may not know.

What do you have?

What is your illness?

M. STEPANEK: My disease is a very rare form of muscular dystrophy, called disautonomic mitochondrial myopathy. And what it does is cause things I do automatically, like breathing and circulating blood and oxygen correctly, and I digesting certain foods, other things that we do without thinking, causes my body to forget to do those things.

KING: Does your body forgets to breathe?

M. STEPANEK: Yes. I have apnea. And I have asthma. And I am on a ventilator that is hooked up to a trach which goes into my neck, and it pushes breath in and out of me so that I can never stop breathing and forget to breathe.

KING: You'll have this the rest of your life.

M. STEPANEK: Probably, yes.

KING: Now Christopher Reeve, who we also see, that's completely different, right?

M. STEPANEK: Right.

KING: He's paralyzed. You're not paralyzed?

M. STEPANEK: No.

KING: You have complete movement. You can walk, right.

M. STEPANEK: I am not paralyzed. KING: How long can you go off that?

M. STEPANEK: This?

KING: Yes.

M. STEPANEK: Well, I have something called a trach collar, which is a little thing that I hold all of the time like a mask I put over that. And there's either the nebulizer version. We put fluid medicine into it. We like blow oxygen into it, so it sends the medicine in. Or for like when I shower, I just have this set up without the neb part.

KING: So you can't be without some help in breathing?

M. STEPANEK: No.

KING: And when you get sick, what happens? Like the last time you were in the hospital was for what?

M. STEPANEK: Well, the last time I was in the hospital, it started when I was having a lot of suffocating spells, and so we decided to put my trach back in. And my -- I was not circulating oxygen and blood correctly. So my lips and my fingers and my toes were all bursting apart and bleeding.

KING: Bleeding?

M. STEPANEK: Bleeding. And I was just dying. Sometimes I'll joke that I was a preteen zombie.

KING: Do you panic when you have this?

M. STEPANEK: Sometimes, yes. And sometimes, no. I don't panic when I'm living with it. But sometimes, in fact most of the time, I will panic. And I will not just panic, I'll get frustrated, and I'll think, "Why? And I want to breathe and help me." So it's really frustrating.

KING: You've had three siblings die, right?

M. STEPANEK: Right.

KING: Tell me who they were?

M. STEPANEK: Katie (ph) was the oldest, Stevie, and then Jamie. Jamie was the only one I knew. And he and I had such a brotherly bond.

KING: Katie and Stevie died before you were born?

M. STEPANEK: Yes.

KING: And you just turned 12?

M. STEPANEK: That's right. KING: Now do they talk to you about life expectancy?

Do they say -- because the last time I remember your mother said, and we'll talk to her later -- that it's possible that you could leave us tomorrow, or be with us for years.

M. STEPANEK: I'm hoping for years. I'm planning on living to be 101, or more.

KING: And you're going to be a father.

M. STEPANEK: That's right.

KING: Right?

M. STEPANEK: Aside from my poet and peacemaking, yes.

KING: And you want to be a poet?

M. STEPANEK: Yes.

KING: Does that mean -- you are a poet already, but do you want to be, in adulthood?

M. STEPANEK: I want to be a peacemaker. And I want to spread peace through public speaking and my poetry. And I believe that there are three easy choices to peace. And we have to choose them, and stick to them. We have to choose to make peace an attitude We have to want it, and make it something that truly matters inside of us.

KING: Doesn't it seem to you kind of nuts that anybody would not want peace?

M. STEPANEK: Yes.

KING: I mean, it's kind of crazy.

M. STEPANEK: It is.

KING: War is crazy.

M. STEPANEK: It is.

KING: But why haven't we ever stopped it?

You're a wise young man.

M. STEPANEK: I wish we would. And there really is no (AUDIO GAP) reason, or anything like that. It's just us making the wrong decisions.

KING: Let's go back to the poetry. You write poems all the time?

Are you always writing?

M. STEPANEK: Yes. And I do write journal entries, so that I don't have to...

KING: So you keep a journal.

M. STEPANEK: Yes. So that I don't have to write it, I'm doing a oral journal into a tape recorder that I'm -- I talk into it, and I record it.

KING: And somebody transcribes it?

M. STEPANEK: Yes.

KING: Now, when you wrote poetry at age three, you couldn't write at age three. You had to be oral dictating it, right?

M. STEPANEK: Well, what happens is that my mom studied grief and things, so she would see me acting on doing these things, which were some of my original poetry, so she'd write them down and record them. And I learned to read by accident at an early age. So one day, I looked over my mom's shoulder and I said, "Mommy, why are you always writing down everything I say?" So she told me what she studied, and how I was saying it. It was kind of like poetry. And it was really neat. So across the years -- or actually across the months as I would look over her shoulder, I'd proofread. And I'd say, "No, that's not what I said. I did not say that. You got it wrong."

So then -- so I started dictating poetry.

KING: So you were reading young?

M. STEPANEK: Right.

KING: Yes. Have you ever been in a school?

M. STEPANEK: Yes, from preschool through fourth grade, and the beginning of fifth grade I was in a public school. But as I was getting sicker and sicker, I was only taking half days, and then quarter days. So soon I started home schooling.

KING: You like home schooling?

M. STEPANEK: It is very nice.

KING: We'll be right back with Mattie Stepanek. We're going to read you some of the poems from his latest book. We're going to have him do most of them.

What does J.T. stand for?

M. STEPANEK: Joseph Thaddeus. Joseph was my middle name, and Thaddeus was my confirmation name.

KING: Matthew Joseph Thaddeus Stepanek. We'll be right back with M.J.T.S. right after this. Don't go away.

(BEGIN VIDEO CLIP, "2002 Jerry Lewis MDA Telethon")

KING: What does Jerry mean to you?

M. STEPANEK: Jerry means so much to me. He is just -- he is the greatest hero, the funniest -- one of the funniest people I've ever met and one of the most inspirational I've ever met. And I just think that the world is so much better off with Jerry around.

(COMMERCIAL BREAK)

(BEGIN VIDEO CLIP, Book Signing, Northridge, California, August 29)

M. STEPANEK: When I hold my mommy, and we think of why and how. And when he was with us and left us, we wish we could have prevented it and stopped his breath and saved him from never needing breath for birthday candles. But then we remember, and we don't understand. It happened anyway.

(END VIDEO CLIP)

KING: We're back with Mattie Stepanek. His newest is "Celebrate Through Heartsongs" and published by Hyperion.

How did you come up with this idea of "Heartsongs"?

M. STEPANEK: Well, the concept started when I started writing poetry, and I -- my mom asked me what was a heartsong? And so, I wrote a poem that's in the "Heartsongs" book called "Heartsong," and it explains what a heartsong is.

And a heartsong is your inner message, it's your inner beauty, like what you are meant to do in life. My heartsong is to help others hear theirs again.

And all heartsongs are different and unique and beautiful. And even though similarities are good, it's the differences that make them special. And we should never try to force our heartsongs on others or have all the same heartsongs.

And it's sad that people who are fighting over whose heartsong is better nowadays, because they're all different and beautiful.

KING: How do you handle being well-known?

M. STEPANEK: It's a lot of fun. People will come up to me everywhere and say, "Ah, I saw you on LARRY KING, or, "Ah, I saw you on `Oprah.'" And it's really nice, and a lot of people say, "Is it a pain?"

And I say "No." And it's not annoying. You always are trying to get some place, but it's nice that I know I've gotten out there, and that I've inspired people.

KING: What keeps your hope going? I mean, you know three siblings passed away, right?

M. STEPANEK: Right. KING: So you're kind of fighting odds. Yet you're always -- every time I see you, you're up.

M. STEPANEK: Yes.

You know, I'm not -- everyone gets frustrated, everyone does. I mean it's human. I get frustrated; I get angry; I get sad; I have feelings too.

And what keeps me going, a big factor, is my mom who's always been there for me, and another huge factor is prayer. And I'm very close to God, and I feel that there is a heaven and you will move on. But we shouldn't waste our time here on earth; we should enjoy it while it lasts.

KING: You're still 12, you know. I mean, you realize you're 12.

M. STEPANEK: Yes.

KING: What is it that you miss the most you'd like to do that other kids do?

M. STEPANEK: You know, it's kind of hard, because I really -- I see kids on their Rollerblades and their bikes and just running around, climbing trees, and I used to do that. And I loved doing that.

KING: You did? At one time?

M. STEPANEK: Yes. And kids will think, "Wow, he's so lucky to have a wheelchair. He gets to sit down all day." And kids will say, "Hey, can I take a ride in your wheelchair? That must be so fun."

And I say, "Hey, can I have all your muscles and take my trach out, so I can run around. Can I ..."

KING: It always looks better on the other side.

M. STEPANEK: Yes. And some kids say "Yes, sure." And then they hear about my disease and they reconsider. And some kids think, "You know what, maybe we shouldn't stay."

But you know what? When I did have not the trach, just the oxygen, I earned a black belt in martial arts. I did flips off the diving board; I would climb trees; I would run; I Rollerbladed. I did everything.

And you know what, even though it's sad that I can't do them anymore, I'm still happy that I know that I did them.

KING: You define optimism.

I'm going to read one of yours, and I want you to read from your new book. But I always liked this, "Important Things." This was from "Heartsongs," this was your first book, right?

M. STEPANEK: Right.

KING: "When I grow up, I think maybe I will be a snowman, because when it snows outside, I'll already be cold and like it. And children will play with me and laugh and sing and dance all around me. And those are important things to have happen when you grow up."

M. STEPANEK: Those are.

KING: Read some. Let's hear some from the new "Celebrate Through Heartsongs," and we'll be asking questions because I want to talk to you about peace and some new ideas you have. But let's pick one out from the brand new book.

M. STEPANEK: OK. I'm going to start with a poem that I wrote a couple of years ago, and I was walking outside one day; it was really early. We were going somewhere, and I decided to write a poem about the sky.

KING: The sky?

M. STEPANEK: Yes.

KING: And it wasn't included in a previous book?

M. STEPANEK: No.

KING: OK.

M. STEPANEK: "Rapture": Have you witnessed the early morning, right before the sun rises and the sky glows purple lava lamp? The clouds are the dark, floating lumps, and the still, gentle earth is to look upon.

KING: This is natural to you, right? You had no training in any kind of writing or anything? No one has come and taught you little principles of poetry and prose?

M. STEPANEK: Actually, when I would write my poetry, if I began to write my own, my mom would help me proofread and she'd teach me the grammar and the spacing and some -- like, you know, all that grammar stuff. So, that's how they really come out.

KING: Because I've interviewed many -- fortunately, many outstanding poets in my life, and they all told me that the secret of poetry is that every word is important.

M. STEPANEK: Every word.

KING: Every word. "Ah" is important.

M. STEPANEK: And not every -- not just every word, every feeling that goes with every word.

KING: We'll be right back with more of Mattie Stepanek. The book is "Celebrate Through Heartsongs." He was in Los Angeles for the telethon. We both appeared on it on the opening night on Sunday night.

He may have made another appearance, but we taped this earlier for broadcast tonight. Mattie Stepanek.

We'll be right back.

(BEGIN VIDEO CLIP, "2002 Jerry Lewis MDA Telethon")

KING: What does Mattie mean to you?

LEWIS: What Mattie means to me, is he is -- he is the elixir for all of the poisons out there. When you have the naysayers, when you have the people that break your heart because they come and they send you an e-mail, how much money do you get from the telethon?

And they break your heart with this kind of stupidity, then I've got Mattie, who looks at me as he did, we were with the firefighters in Vegas. I gave him a hug when I had to leave, and he held me and didn't let the hug be quick. And when I did pull away he said, quote, "That was the greatest hug I've ever had in my whole life."

Well, where do you think I take that, OK?

(END VIDEO CLIP)

(COMMERCIAL BREAK)

(JOINED IN PROGRESS)

KING: We're back with Mattie Stepanek. Mattie J.T. Stepanek, I love that. And the new book is "Celebrate Through heart Songs." And we're going to ask him about his peace ideas but I wouldn't to hear a couple more poems first.

M. STEPANEK: This is called a hope haiku.

KING: Hope what?

M. STEPANEK: Hope haiku. And I wrote it last year in September. It wasn't on the day. It was about a week later.

KING: After the September 11th?

M. STEPANEK: Hope haiku: Gentle and peaceful. We are the children of one God yet so many faiths. True, we are different. Unique mosaics of life. Still, we are the same. United we are the festive fabric of life. Divided we fall.

KING: The festive fabric of life. Where did you come up with that?

That's pretty good.

M. STEPANEK: Thank you.

KING: Where were you on September 11th? M. STEPANEK: At home.

KING: Were you up?

M. STEPANEK: Oh, yes. I was doing my math home -- schoolwork, and one of the people who lived upstairs ran halfway down the stairs and yelled, turn on the TV right now. Any news channel. And they ran back upstairs. So we did. I had a TV in my room and I was doing on my bed in a red shirt and I turned it on and we turned it on and we look. And we were just horrified. Not only just the principle of it, but why would anyone do that?

And we turned it on about five minutes before the second plane crashed in. And my mom and I said, oh, no mother plane just crashed into it. And my mom said no, it was just a replay. And I said no, it wasn't. Because the building was already on fire. And it was not only a loss for me as a peacemaker, but I'm friends with the firefighters through the muscular dystrophy station. They're one of the biggest supporters. They really help people celebrate life.

KING: Collect the most.

M. STEPANEK: Yes. And I was sitting there all day, before and after the building collapsed, looking to see who was alive, who was missing.

KING: Did it give you pause with your thoughts about peace?

Was it a major step backward?

M. STEPANEK: Yes. I was up all night wondering.

KING: You wrote that day, too, didn't you?

M. STEPANEK: Mm-hmm. I wrote three poems that day.

KING: I want to hear more ideas on peace. Let's hear another poem from "Celebrate Through Heartsongs," and then your ideas, maybe, "a little child shall lead us," someone once wrote.

M. STEPANEK: This was a poem that I wrote this new Year.

"Resolution Invocation": Let this truly be the celebration of a new year. Let us remember the past, yet not dwell in it. Let us fully use the present, yet not waste it. Let us live for the future, yet not count on it. Let this truly be the celebration of a new year, as we remember and appreciate and live, rejoicing with each other.

KING: All right, what are some new ideas Mattie has?

You want to talk about peace?

You're a peace-maker.

M. STEPANEK: Yes, and, you know, a lot of people especially nowadays are beginning to question peace a little bit, is peace possible?

Can we do it?

Why are we even trying?

And I think it's sad that people are questioning it. Because I believe that peace is possible, and if we chose to do three things, then we will have peace.

I believe that if we choose to make peace an attitude, and want it, and we make it something that truly matters inside of our hearts, and then if we choose to make peace a habit, to not just think it but to live it and share it, and if we choose to make peace a reality and spread it throughout the world and get involved and understand what's going on, we will have peace.

KING: But you're going to have to do away with hate.

M. STEPANEK: We have to. We have to choose to get rid of the hate and bring in the peace.

KING: It is a choice.

M. STEPANEK: It is a choice. A big choice that you have to be devoted to.

KING: Back with more of Mattie Stepanek on this edition of LARRY KING LIVE on this Labor Day night.

Don't go away.

(BEGIN VIDEO CLIP)

UNIDENTIFIED FEMALE: He really has a wonderful message about peace. He wants to be a peacemaker. If anybody can do it, he can do it. I mean, he has such a gentle soul and such wise thoughts for such a young age.

UNIDENTIFIED FEMALE: I'm going to write to President Bush, and I'm going to say, I have the best representative for the United Nations representing America, please send him there to put some sense into the heads of these adults who think they're doing the right thing and they're not.

(END VIDEO CLIP)

(COMMERCIAL BREAK)

KING: We're back with Mattie Stepanek, 12 years old in years; in wisdom, way ahead of that.

I'm going to read one of Mattie's poems, also from the new book, "Celebrate Through Heartsongs," and then Mattie is going to read some more. And we'll talk more about peace. We're going to meet his mother in the final segment.

And this one is called, "About Heaven." When did you write -- May of 1994. This was written when you were -- you were tiny.

M. STEPANEK: May of '94 would make me 3.

KING: Three years old.

M. STEPANEK: Yes.

KING: He wrote this when he was three. "Now I will tell you about heaven. Where is heaven? It is way over there. And it is way over there. And it is way over there, too. It is everywhere. What does it look like? It looks like a school. And it looks like a farm. And it looks like a home. It looks like everything. What does it sound like? Well, I really don't know, because I'm just a little big boy with a brother and another brother and sister and a friend who live in the everywhere and everything of heaven. But perhaps heaven sounds like forever."

I've got no comments.

Pick one out, Mattie.

M. STEPANEK: I'm going to read two more. And this one that I'm about to read is called, "I Am."

KING: I read this before the show to some of the staff.

M. STEPANEK: Really?

KING: They flipped over this. I love this.

M. STEPANEK: It's my favorite poem in this book.

KING: And how did you come to write it?

M. STEPANEK: I wrote it last year, February, and I was thinking about God, and what it -- what he, she, it is.

KING: What he, she, it is? This is "I Am" from "Celebrate Through Heartsongs" with Mattie J.T. Stepanek.

M. STEPANEK: "I Am." I am black. I am white. I am all skins in between. I am young. I am old. I am each age that has been. I am scrawny. I am well fed. I am starving for attention. I am famous. I am cryptic. I am hardly worth the mention. I am short. I am height. I am any frame or stature. I am smart. I am challenged. I am striving for a future. I am able. I am weak. I am some strength. I am none. I am being. I am thoughts. I am all things, said and done. I am born. I am dying. I am dust of humble roots. I am grace. I am pain. I am labor of willed fruits. I am a slave. I am free. I am bonded to my life. I am rich. I am poor. I am wealth amid strife. I am shadow. I am glory. I am hiding from my shame. I am hero. I am loser. I am yearning for a name. I am empty. I am proud. I am seeking my tomorrow. I am growing. I am fading. I am hope amid the sorrow. I am certain. I am doubtful. I am desperate for solutions. I am leader. I am student. I am fate and evolutions. I am spirit. I am voice. I am memory not recalled. I am chance. I am cause. I am effort, blocks and walls. I am him. I am her. I am reasons without rhymes. I am past. I am nearing. I am present in all times. I am many. I am no one. I am seasoned by each being. I am me. I am you. I am all souls now decreeing: I am.

KING: When you write, do you write quickly?

M. STEPANEK: Sometimes I write quickly. And sometimes it takes me time. And I write, as I say a lot, anytime I'm not sleeping.

KING: When you look at the world now, and your thoughts of changing this through habit and the like, and then you look at the Arabs and the Israelis and United States and Iraq, don't you think it's all so large?

M. STEPANEK: The world?

KING: Yes. I mean, no, it's so above us. Decisions are being made by people who are not going to change habits.

M. STEPANEK: Right. And we are made by one thing. And who cares of what it's called. Some people call it God, Buddha, Allah, Yahweh, all the different names are all beautiful and unique. And that's what whatever the God is wanted it. But whatever the God is, didn't want us fighting over what we call him.

KING: Do you think anyone is born bad?

M. STEPANEK: No.

KING: We'll be right back with Mattie Stepanek. In a little while, his mother and his dog. The book is "Celebrate Through Heartsongs."

Don't go away.

(COMMERCIAL BREAK)

(BEGIN VIDEO CLIP)

UNIDENTIFIED FEMALE: I felt I had to give him back something, he gave us so much. So I saw this cuddly, soft little dog and I wrote a little note to him, thanking -- to him and his mother both. I think his mother is equally important, naturally.

And so -- and he said to me, he said that was just the one he wanted.

(END VIDEO CLIP)

KING: We're back with our man, Mattie Stepanek. The book, "Celebrate Through Heartsongs," is his fourth book. The earlier ones: "Heartsongs," that was the first; "Journey Through Heartsongs"; and "Hope Through Heartsongs" -- all "New York Times" bestsellers.

Let's do another. What have you selected for us, Mr. Stepanek?

M. STEPANEK: It's the last poem in the book. And it's illustrated. And I don't...

KING: Let me show it on this camera, and then you'll read it. Who illustrated it?

M. STEPANEK: I did. I do all the illustrations in there.

KING: You paint?

M. STEPANEK: I fingerpaint mostly.

"Shades Of Life": The color of the sky is blues and grays. The color of earth is greens and browns. The color of hope is rainbows and purple. And the color of peace is people together.

KING: In fact, you even decided, right, that rainbow is your favorite color now, right?

M. STEPANEK: Sunset is still my favorite color, and rainbow is second.

KING: Sunset?

M. STEPANEK: Sunset. All the oranges and pinks, purples and browns coming together in that beautiful gift we get once a day.

KING: When you lost your sister, who you knew, right -- or your brother you knew.

M. STEPANEK: It was my brother.

KING: The sister and the other brother, you didn't know.

M. STEPANEK: No.

KING: How old was he when he died?

M. STEPANEK: He was four when he died.

KING: And you were how old?

M. STEPANEK: Two or three. And it was hard for me when he died, because I didn't understand the word death. I didn't -- I mean, I understood gone. I played peek-a-boo, but I didn't understand gone.

KING: So, where did you think he went?

M. STEPANEK: Well, he had died, and I wasn't allowed to go in his bedroom. And I thought he's just playing hide and seek with me. And I accidentally got into his bedroom. And I saw them putting him into the big white box, his casket. And I was so happy. I thought, "Oh, he's playing peek-a-boo with me."

And we went to church. And I remember there was the celebration for Jamie. I was told it was a celebration for Jamie. And all through the mass, I would knock on the box. And I would say, "OK, game over. You can come out now. Peek-a-boo. Come out." And I didn't know why people were so sad.

And then, when we went to the cemetery, I was beginning to panic. And I was thinking, "Why isn't he coming out?" And then when they put him into the ground, that's when I realized he's not coming back.

KING: And how did you deal with that?

M. STEPANEK: I was so sad. And I cried with my mom.

KING: Was that the saddest moment of your life?

M. STEPANEK: Probably, yes. And you know, it's sad. And as I -- that's when my poetry began, really. And all my earliest works were about Jamie, Katie and Stevie, and then I began to write about other things. And you notice how my poetry evolved as I grew up, especially my poetry about death.

KING: You believe Jamie is somewhere though, right?

M. STEPANEK: Yes.

KING: Looking at you?

M. STEPANEK: Watching me.

KING: You'll be with him some day -- way off in the future, we hope.

M. STEPANEK: Yes.

KING: Do you go to sleep at night worrying about getting up in the morning?

M. STEPANEK: Sometimes I worry about getting up in the morning. Sometimes I worry I'm going to have a nightmare. I'm 12; it's natural.

KING: Do you like all the things other 12-year-olds like? Like, I mean, do you like tapes and visual aid? Do you like Disney? And do you like all the characters?

M. STEPANEK: Speaking of Disney, we've had a wonderful trip. We went to Painted Desert, Grand Canyon, Hoover Dam, and then last night we did "Lion King," which was just phenomenal. And we did Disneyland, and that was great.

We went with Christopher Cross and his family -- Madison (ph), his daughter; Rayne (ph), his son; and his wife, Ann. And they are wonderful people. They are a lot of fun to hang out with. And we...

KING: Were you able to go on rides?

M. STEPANEK: You know the -- there's a very interesting story about rides. I'm like a lot of 12 year olds, I hate roller coasters.

KING: A lot of 68-year-olds hate them too. M. STEPANEK: And so, on the Disneyland -- have you ever heard of Thunder Railroad?

KING: Yes.

M. STEPANEK: It's the second largest roller coaster there.

KING: Seen it.

M. STEPANEK: My mom remembered it as they take you up, and there's no drops, just around and around and around a few times really fast and then it stops. So, I think, "OK." And then, when we started to go, my mom said when she heard, clank, clank, clank, clank, clank, clank, clank, clank, clank, clank, she thought, "OK." And then, she said when she heard, clank, clank, clank, she though, "OK, maybe we're going up for a view." Then we dropped, and we all dropped, and we all dropped. Then we stopped. And my mom thought, "OK, it's over." Then she heard, clank, clank, clank, clank. And my mom was loving it.

And I'm screaming, "Mom, (UNINTELLIGIBLE) you again." But you know what? I got something good out of that. I can say to all my friends, "Hey, I went on a real roller coaster."

KING: You weren't scared?

M. STEPANEK: Well, I could be dishonest on television and say, "No, of course not." But that would be such a lie.

KING: You were scared?

M. STEPANEK: I was -- no, no, no, I -- actually, to be quite honest...

KING: To be quite honest.

M. STEPANEK: ... I was not scared.

KING: What were you?

M. STEPANEK: Terrified.

(LAUGHTER)

M. STEPANEK: We will take a break and come back with our remaining moments and Mattie Stepanek will be joined, as the last time, with his wonderful mother, Jeni, and his dog, which is new, Mica.

Don't go away.

(COMMERCIAL BREAK)

KING: We're back with Mattie Stepanek in our remaining moments.

And we are joined by his wonderful mother, Jeni Stepanek, who was with us the last time, and a new visitor, Mica. Jeni, who is Mica?

JENI STEPANEK, MATTIE'S MOTHER: Mica is Mattie's service dog-in- training. He's five-and-a-half months old, a golden retriever, and he's wonderful.

KING: It says, "Assistance puppy in training." And what will Micah's purpose be, other than to be loved by our little friend here?

J. STEPANEK: Ninety percent of it is being loved, OK. He will also, he's already learned how to open and close doors. He picks things up for us, and he will also be trained to respond to the word "Help," and bark for assistance.

He'll listen for Mattie's alarms at night time, and bark if something goes off if, you know, because we don't have nursing at night.

KING: And he is Mattie's dog, right?

J. STEPANEK: He will be Mattie's dog. Right now I'm the trainer for two years.

KING: They teach you...

J. STEPANEK: Canine Companions for Independence. There's a trainer...

KING: Did they give you the dog? Why did you name him Micah, Mattie?

M. STEPANEK: Micah is Biblical and it means "fool's gold." So he'll be my puppy that's gold, but nobody's perfect and he's only (UNINTELLIGIBLE).

KING: Is this your first dog?

M. STEPANEK: Yes.

KING: What's it like?

M. STEPANEK: It's a lot of fun. In the morning when he's not working, it's kind of interesting to have 50 or 60 pounds jump on you.

KING: They're great dogs, though.

J. STEPANEK: Oh, he's wonderful. He is so smart, and so eager to please. And he's just a great dog.

KING: He'll be very important to Mattie.

J. STEPANEK: Oh, very much.

KING: How is Mattie doing?

J. STEPANEK: He's doing well. It takes a lot of support and you have to stay literally two steps ahead of him at all times medically. But he's doing well. We...

KING: Is he on medication a lot?

J. STEPANEK: He's on a lot of stuff. He gets a lot of blood transfusions, a lot of asthma medicines, and he's on a lot of oxygen. He's on 60 to 70 percent oxygen and pretty high ventilator setting.

KING: So every day you wake up is a new adventure to you?

J. STEPANEK: Yes. You never know what to expect. And we plan things carefully. I mean he lives a full life, and we travel, but we travel very carefully.

I mean our whole trip was planned around knowing which MDA clinics were nationwide. And we never stopped any place that we didn't know where the hospitals, the doctors, the MDA staff. Everything's carefully planned and organized.

It's a very time-consuming life. But well worth it.

KING: And your feelings about this whole Jerry Lewis thing, and everything, you're very close to that?

J. STEPANEK: Oh, absolutely; it's in my heart. I love it that once a year they, and everybody has it right in front of them, and they see the reality of what children and adults with muscular dystrophy have and what they need.

KING: Do you think someday you'll be cured?

M. STEPANEK: You know what, a cure is possible if we never give up the hope. And so it may not be in my lifetime or your lifetime or anybody's lifetime that's right now, but if we give up the hope, we stop raising money and we stop thinking "We're going to have a cure," we won't.

KING: Now Jeni, what your type of dystrophy is not his, right?

J. STEPANEK: It, by word yes, but I have adult onset mytochondria myopathy (ph); he has infant onset. And when you are diagnosed as an adult it's more muscular. And when you're diagnosed as an infant, the earlier you're diagnosed it's always far more devastating.

So my children, it was neurologically devastating. And I had all four kids in four years and had no clue that they were going to have this. There was a misdiagnosis early on.

KING: Had they been diagnosed correctly would they have lived?

J. STEPANEK: Probably not. And we still -- Mattie is a combination of miracle and the best medical practice possible.

KING: He's outlived all them, right, in age?

J. STEPANEK: Not just all of them; he's outlived any child with this particular form of the disease. You just don't live through early childhood.

KING: And any child's who's got this has died?

J. STEPANEK: Yes, yes. In fact many diagnoses are made post mortem. They realize in hindsight that's what the child had. Which was the case with my first two children.

KING: And you've been how long in a chair?

J. STEPANEK: I went into a wheelchair in 1994. I was diagnosed in 1992, which was when Mattie, my youngest...

KING: What's it like with both of you, I mean, isn't that...

J. STEPANEK: It's interesting. Rule number one is the parent always has a slightly faster wheelchair than the child, OK? He thinks his is faster, I just don't put mine in top speed.

So I can always outrun him.

KING: But you go outside together, I mean you do everything...

J. STEPANEK: We go every place. We travel in a specially equipped van that's got electricity in it and everything. There's nothing that we don't do, or won't try to do.

KING: You know you have a great mother, right?

M. STEPANEK: I know.

KING: And you know how special she is?

M. STEPANEK: She is just the greatest sense of hope, love and every positive thing you can think of, even schoolwork.

KING: You are his teacher, right?

J. STEPANEK: Yes.

KING: And how do you, how do they train you for that?

J. STEPANEK: Well, I'm actually a teacher by training and by...

KING: Oh, you are.

J. STEPANEK: ... I have graduate degrees in education. And then I don't use one particular curriculum. I kind of study and get the best of what each curriculum...

KING: You test him too?

J. STEPANEK: Yes, I do testing. He has final exams; he's in high school, so, and he also...

KING: He's in high school? J. STEPANEK: He's in high school, and he also attends part-time at a community college. Like when he started taking Spanish two years ago, I didn't know the first thing about Spanish so I sent him to community college.

KING: Speak Spanish? Getting there?

M. STEPANEK: Poco.

KING: Is he considered in that special child; I'm not talking about the illness?

J. STEPANEK: Yes, he's had academic testing and IQ testing that places him extremely high. But I say I don't go by those numbers, because a lot of that is what he's been exposed to, and the books that he's read, and I think that's, you know, tests sometimes reflect things like that.

I think that he's got a gift, and I'm doing my best to help him use his gift. Or learn to use them on his own.

KING: Our guest has been Mattie Stepanek, who wrote once "The Fourth of July is a very sad day to not see any fireworks." Mattie Stepanek's newest is "Celebrate Through Heartsongs."

His mother is Jeni Stepanek; his dog is Micah Stepanek. Give him a last name, right?

M. STEPANEK: Yes.

KING: I like the suspenders. Thanks very much for joining us on this special edition of LARRY KING LIVE.

Have a great rest of the Labor Day weekend. From Mattie, Jeni and Micah and the whole crew, good night.

(BEGIN VIDEO CLIP, "2002 Jerry Lewis MDA Telethon")

M. STEPANEK: We need to be. Just be. Be for a moment kind and gentle, innocent and trusting like children and 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.

(END VIDEO CLIP)

(COMMERCIAL BREAK)

KING: Mattie Stepanek accomplished a lot in his very short life despite the pain he endured, he always turned toward the light. The smile, his attitude and his spirit made you feel so much better about life just being in the same room with him. Mattie, thank you so much for being such an inspiration. You left us much too soon, pal, and we're going to miss you. Our thoughts, prayers are with his courageous mom Jen. Gene Hackman was supposed to be our interview tonight. That will play on the 7th of July. Thank you for joining us. "NEWSNIGHT" with Aaron Brown in next. Good night.

TO ORDER A VIDEO OF THIS TRANSCRIPT, PLEASE CALL 800-CNN-NEWS OR USE OUR SECURE ONLINE ORDER FORM LOCATED AT www.fdch.com


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