Mattie Stepanek died June 22, just a few weeks before his 14th birthday, after a lifelong, arduous struggle against mitochondrial myopathy.

Mattie had served MDA as national goodwill ambassador since 2002. He was also known worldwide through his five "Heartsongs" books of poetry and the uncanny poise and insight he displayed in public appearances and media interviews.

During his short life, Mattie repeatedly had faced death and experienced "miracle" recoveries. This year, he was hospitalized in early March after a cardiac arrest. He was placed under heavy sedation for severe pain, accompanied by several infections and weakness in virtually all systems of his body.

For a short time, he was awake and comfortable, able to speak with his mother, regain some weight and crack his share of jokes. By early June hed taken a turn for the worse and was unable to rally again.

Mattie's passing was as remarkable as his life. His death was reported by all major news media.

At his funeral in Maryland, testimonials were given by Oprah Winfrey and MDA Board member Jann Carl. MDA Youth Chairperson Billy Gilman sang a song based on one of Mattie's poems.

President Jimmy Carter gave the eulogy.

Fire fighters and Harley-Davidson riders from several states accompanied his casket to the church and to the cemetery, where Mattie was laid to rest alongside three siblings who'd died in early childhood.

"MDA was joined by the entire nation in saying a final farewell to the most remarkable youngster ever to represent the Association," MDA President & CEO Robert Ross wrote to the Board of Directors in late June.

Mattie wanted to be remembered as "a poet, peacemaker and philosopher who played."

MDA received more than a thousand messages of condolence, remembrance and tribute by e-mail, cards and letters, from some two dozen countries.

After her son's burial, Mattie's mother, Jeni, told MDA: "Mattie will continue to work for MDA and so will I. We're not finished helping Jerry's kids."

MDA's 2004 Telethon will be dedicated to Mattie, and Jeni is slated to appear on the national broadcast.

These pages offer a sampling of comments made about Mattie after his death. They reflect the impact this precocious young man had on MDA, other families with neuromuscular diseases, and everyone who knew him or encountered his words.

Jerry Lewis

"Ode To Mattie"

Mattie is gone
And so is my spirit
How do we go on without Mattie's presence?
We have to
And we'll probably be all right if we carry what Mattie was
And what he believed the world was all about,
If we follow his understanding about life and love
We can't go wrong (And the child shall lead us)
Goodbye Mattie, my friend, and young champion
I will miss you very much

Jimmy Carter

[When I ran for president, I] campaigned in all 50 states. Subsequently, I traveled around the world. In fact, since I left the White House, my wife and I have been to more than 120 nations.

And we have known kings and queens, and we've known presidents and prime ministers. But the most extraordinary person whom I have ever known in my life is Mattie Stepanek

He was as proud as I was when I won the Nobel Peace Prize [in 2002]. As soon as the ceremony was over at the hall in Oslo, I went by myself to the top of a little hill right behind the place and I found a rock and I inscribed on it. And I sent it to Mattie, because I felt that he shared the honor that I had received.

Jeni Stepanek

You are what God created people to be ... you are the image of God. I will treasure the gift of your life with mine forever and always, and in your honor, I will carry on your messages of hope and peace and your mission of advocacy, humanitarianism and peacemaking. Please pray for me, and our world.

I love you and you love me,
Mom-mom

Oprah Winfrey

He said to me one day, "My body is trying to die more and more each year, even though my spirit is trying to keep it going even just a little bit longer.

"I don't think they [other children] understand what it's like to know you have to live your life so fast because unless I keep getting miracles, my life here won't last"

With Mattie, the light of his life shined so brightly that every one of us who knew him, who were honored and had the grace to meet him, will feel the glow for the rest of our lives. I know that his Heartsong has left a heart print in my life. A heart print that abides with me even now.

Ed McMahon

Mattie was wise beyond his years and wrote the most beautiful poetry. It was unbelievable to be in his presence. He always said, "Remember to play after every storm." Hopefully, he's playing up in heaven right now.

Billy Gilman

One of the highlights of my career was the opportunity to meet Mattie and share his words with the world through the power of music. Mattie changed my life and I'll miss him.

Whether youre 8 or 80, Mattie taught all of us that we could choose to live with hope and play after every storm as he did. We've lost an extraordinary poet, peacemaker and friend.

Jann Carl

Mattie left us a blueprint. He left us a detailed map, step-by-step instructions, to not only mend our broken Heartsongs, but to make the world a better and more peaceful place in the process.

I had never met anyone that I thought was a real angel. I don't think I even believed in earth-bound angels. Then I met Mattie.

How do we now repair our crumbled hearts? Recall his memories often, play, and then play some more. Practice peace. With the tools that Mattie himself gave each and every one of us, our Heartsongs will be whole again.

Harold Schaitberger, General President, IAFF

I've always admired Mattie's courage, intellect and fire fighter-like passion to battle the odds and emerge victorious. I was proud to call Mattie a friend. He had wisdom beyond his years and an understanding of the preciousness of life that is quite remarkable. His achievements make fire fighters proud of their association with Mattie and with the MDA.

Shelley Obrand, MDA National Task Force On Public Awareness

I was one of the fortunate ones who had the opportunity to meet you at the Telethon in Los Angeles. I was exhilarated to embrace your wisdom, gentle spirit and your fierce determination to make this world a better place. You did just that by being a part of it.

What impressed me most was that, even though you possessed this amazingly brilliant old soul, at heart you were still a child. I loved watching you race up and down the hotel lobby and backstage at the Telethon. I would overhear you talking to your young friends about video games and movies. Your face was animated whether you were talking to Jerry Lewis, Jimmy Carter, your mom or new friends.

Play well, Mattie!

Robert Miller, Matties Publisher

We were so lucky to have known Mattie, a remarkable young poet who taught us not to take anything for granted.

Caitlin

I go to MDA summer camp. I have had mitochondrial myopathy since I was born, which was 14 years ago. Mattie was always an inspiration to me, I have all of his books. Thinking of him opened me up to a world of hope and love. I know that Mattie is in heaven now doing things he couldn't before, and maybe someday later on in life I will join him and I will get to meet him, which I've always wanted to do.

Ann

Up in heaven, there is an angel wearing a tuxedo and an infectious smile! Mattie was not only a messenger of peace but of courage, love and strength tremendous lessons from such a small child.

Renee

When I bought the first volume of "Heartsongs" I could not finish reading it because I could not stop crying. My son had just been diagnosed with Duchenne muscular dystrophy and the pain was still too much for me to take.

About a year later I sat down and read the entire book of poetry. I still cried, but this time I cried tears of joy. Mattie has touched so many lives and has given me hope when I felt that all hope was lost.

Anonymous

Jeni Stepanek must be a very special lady to have raised such an incredibly beautiful child as Mattie. It seems she has suffered more loss than any mother should have to endure.

Michael

I started riding Harley-Davidsons in late 1997. My dealer asked me if I would be interested in an annual fund-raiser for the Muscular Dystrophy Association. Somewhere in the mix, I met Mattie and all of a sudden, it was like an awakening. This kid had such a positive outlook and was so energetic that I knew I had to get more involved. I've raised money for the past seven years and have had the opportunity to volunteer as a counselor at MDA summer camp.

Rev. Kernitz

Mattie has been an inspiration to me. Sharing his poetry with others has given me contacts that I treasure. My 18-year-old granddaughter has also enjoyed Mattie's poems and that is a great bond between us.

Karen

I am another "mito mommy." I have watched Mattie over the years show that he had a mommy that also saw and believed in her perfect son! I have shared with my three mito children Mattie's poems during tough times for us.

Chuck

As a 54-year-old, I was unable to turn away from the television each time I saw Mattie on Labor Day. The emotion that he brought out and the passion that he had for life were truly amazing. There is an empty place in this world now, but there is another angel in heaven who can truly reach out and touch many. God bless you, Mattie.

Johnna

My husband died May 31, 2003, from amyotrophic lateral sclerosis (ALS). During his illness a friend of ours gave my husband several of Mattie's books. Mattie's poetry brought inspiration and hope to all of us at a time we were jaded by loss.

Deepak

Some special memories that reside in the deepest core of my heart:

How you turned behind to look at Jeni and clapped with such innocence and purity every time Larry King would announce "in the last segment we will have his mom, Jeni, on" covering your face in shyness and glee when Jimmy Carter came to meet you your joy at practical jokes like the remote-control farting machine (I got one, too, after hearing about it from you) the angelic tone of your laughter

Todd

My daughter, Brianna, is the MDA Goodwill Ambassador for Northern Illinois. We wish to extend our deepest condolences to the Stepanek family. When I think of Mattie now, I see him standing in a Greek theater surrounded by Socrates, Plato, Buddha, Confucius and Mother Teresa. They are debating the topics of Life and Love, and Mattie is winning the debate.

Charlotte

As an assistant teacher in a classroom of emotionally disabled children, I would read poems from Mattie's books frequently. I never had to ask the kids to be quiet because they sat and listened to his words!

Anonymous

Rarely have I been as moved emotionally as I was when I heard that Mattie had passed away. What a beautiful human being! As tears streamed down my 70-year-old face, I thanked God for giving us Mattie if only for 13 years.

Richmond, Va., Fire Fighter

MDA has lost a great ambassador. I got to meet him several times at the softball tournament in Maryland and he was truly a gem. The only silver lining is that now he will know no more pain, no more braces or wheelchairs.

Kelly

Laughter was a part of Mattie's daily routine. He was not angry at the world he adored it. He was thankful to God for providing him with all of his gifts family, friends, his poetry. Mattie was truly a gifted young boy.

Anonymous

I was introduced to Mattie through Billy Gilman's music. That year, I bought one of his books. I read every poem. I even did a project in seventh-grade English with his poems. And in eighth grade I researched his disease, and did a report on it, and included Mattie as the reason I'm who I am, and why I did the report.

Pueri Cantores (Singing Boys)

We will always keep Mattie's spirit alive in our hearts. By unanimous approval of all the boys in the choir, Mattie was made an official member of the Pueri Cantores at the time we performed our benefit concert for MDA in June 2003. Our hearts are heavier today because we have lost one of our own.

Franklin, Fire Fighter

I never had the privilege of meeting Mattie J.T. Stepanek; but what I did get will be a gift that I will treasure. It was after reading about you that I became involved with MDA. Mattie, rest quietly and keep your eye watchful upon us. We will continue the fight, and we WILL find a cure!

Teresa

As I listened to Mattie talk I realized that I need to change my ways of thinking and living. I have so much to be thankful for and yet I do complain about my life. Mattie has made me realize that my life is great. I liked what he said about making peace a habit and an attitude. I am gonna do my best to keep these words in my heart.

For more information about Mattie, including Quest interviews with him, go to www.mda.org/mattie/. There you also can donate to the MDA Mattie Fund. His mother wished MDA to establish the fund in Mattie's name to fight childhood neuromuscular diseases.