[Congressional Record Volume 150, Number 88 (Wednesday, June 23, 2004)]
[Senate]
[Pages S7229-S7230]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




         TRIBUTE TO MATTHEW ``MATTIE'' JOSEPH THADEUS STEPANEK

  Ms. MIKULSKI. Mr. President, I rise to inform my colleagues and all 
who are watching that a wonderful American passed away yesterday. He 
was a 13-year-old boy who lost his life to muscular dystrophy. He was 
known to the world because of his many appearances on radio and TV 
reading his poetry. His name was Matthew Joseph Thadeus Stepanek. The 
world knew him as ``Mattie.''
  Though this young man's death is a great tragedy, his life was a 
triumph. At age 13, he was a gifted author. He was even a noted 
peacemaker. He took a personal challenge and turned it into a life of 
inspiration for all of us.
  Mattie Stepanek once said, ``I want my message to live beyond me,'' 
and it certainly will. His message of peace and hope has reached 
millions.
  He was born in 1990 in Upper Marlboro, MD, and doctors did not expect 
him to live more than 24 hours. He suffered from a rare form of 
muscular dystrophy. He had two brothers and a sister, all who died 
before the age of 4. His own mom also has muscular dystrophy.

  Though the disease would eventually render him unable to walk or 
breathe

[[Page S7230]]

on his own, he was more than a survivor. He began writing poetry at the 
age of 3; poems about hope, peace, love. His life philosophy was, 
``Remember to play after every storm.'' And he did.
  Mattie believed wishes could come true. Once when he was near death, 
he said he had three wishes. He wanted to talk to Jimmy Carter; he 
wanted to have his book of poems published; and he wanted to see his 
poetry read on Oprah.
  Guess what. All three happened. President Carter did call him and 
talk to him several times. He wrote several volumes of poetry. I have 
one with me today called ``Heartsongs.'' This book reached the best 
seller's list because it reached the hearts of so many people. As soon 
as Oprah heard it, she had not only read his poetry but had Mattie on 
the show.
  He was so sick at times the doctors were afraid he wouldn't make it, 
but through hope and prayer his life was saved, one miracle at a time.
  After the chaos and confusion and heartbreak of September 11 and the 
terrible anthrax attack on the Capitol, I was pretty grief stricken. 
One night watching C-SPAN, like so many Americans at the end of the 
day, I saw this wonderful young boy reading poetry. I found his words 
so inspirational, so touching, that I immediately contacted him through 
his hospital, the wonderful Children's Hospital here in Washington.
  Through the hospital, I arranged a visit to him at his home in Upper 
Marlboro, Maryland. I visited with Mattie and his mom, in their 
apartment especially arranged for people who live a life in wheelchairs 
but refuse to be handicapped. We had a great time, talking about life. 
Mattie was so lively, so witty. He was so filled with enthusiasm. He 
was filled with energy.
  I brought the book that I wrote and he had his. I did a little 
reading from mine and he read his poems. It was a great afternoon with 
this special boy, there he was in a special motorized wheelchair with a 
special apparatus that enabled him to breathe.
  Later on, I went to the Children's Hospital to give him the 
Children's Hope Medal of Honor. This medal is given to young heroes who 
have shown valiant effort and courage in facing life's daily challenges 
when they have a chronic or life-threatening illness. If anyone 
deserved it, Mattie deserved it.
  I want the world to know who this little boy is. I want to tell you 
first of all what he said about himself and then what he said to us in 
what then proved to be a farewell. This is the poem.

     I am Mattie J.T. Stepanek.
     My body has light skin,
     Red blood, blue eyes, and blond hair.
     Since I have mitochondrial myopathy,
     I even have a trach, a ventilator, and oxygen.
     Very poetic, I am, and very smart, too.
     I am always brainstorming ideas and stories.
     I am a survivor, but some day, I will see
     My two brothers and one sister in Heaven.
     When I grow up, I plan to become
     A daddy, a writer, a public speaker,
     And most of all, a peacemaker.
     Whoever I am, and whatever happens,
     I will always love my body and mind,
     Even if it has different abilities
     Than other peoples' bodies and minds.
     I will always be happy, because
     I will always be me.

  Isn't that great? But the last page in his book is ``The Daily 
Gift.''

       You know what?
       Tomorrow is a new day.
       And today is a new day.
       Actually,
       Every day is a new day.
       Thank you, God,
       For all of these
       Special and new days.

  Mr. President, thank God for Mattie Stepanek and thank God for a 
loving, wonderful mother, Jeni Stepanek. Our hearts go out to express 
our condolences and our sympathy to her for all of the heartache she 
has had to endure. But we thank her for giving us this very special 
gift, Mattie Stepanek, who truly sang from his heart and was a 
peacemaker.
  I yield the floor.
  The PRESIDING OFFICER. The Senator from Vermont.
  Mr. LEAHY. I thank the distinguished Senator from Maryland for what 
she had to say. My wife and I got to know Mattie. My wife invited him 
to speak at the spouses dinner, the First Lady's luncheon. She told me 
I had to come down and meet this young man. I remember coming in there 
and talking with him. I also talked with him again by phone. I sort of 
hung back because I was not a Senate spouse. I sort of hung back in the 
corner and listened when he spoke. What an inspirational little boy.
  I know the tug I felt when I turned on the news this morning and 
heard what we all knew was going to happen had happened. He is no 
longer with us.
  Somebody in the news said he probably had more life in that short 
span than most people have. The Senator from Maryland said similar 
things. In this case, it is true. He really had.
  I thank her for her statement. I know Marcelle and I had our hearts 
enriched by having met him.

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