Mattie Stepanek: A Fan Remembers

By Ugochukwu Ejinkeonye


"I want people to know that in every life, there are storms. But we must remember to play after every storm and to celebrate the gift of life as we have it, or else life becomes a task, rather than a gift. We must always listen to the song in our heart, and share that song with others"
—Mattie Stepanek (July 17, 1990 – June 22, 2004)

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In a well received article in the summer of 2003, I celebrated Mattie Stepanek, the then 12 year old and terminally sick American poet from Rockville, Maryland, whose five volumes of poetry had at that time sold more than a million of copies. In fact, three out of the five volumes had by that time made the New York Times Best Seller List.

I am compelled to remember Mattie again today: a child I never met, but who became my friend through his very moving poetry and public statements.

Mattie Stepanek

But, sadly, Mattie Stepanek is no more. On Tuesday, June 22, 2004, just before his 14th birthday, Mattie passed on at the Children’s National Medical Centre in Washington as a result of complications related to muscular dystrophy, the disease he had battled with since he was born. He was only 13. 

At 11, Mattie introduced himself thus: “My name is Matthew Joseph Thaddeus Stepanek. I am almost 11 years old, and I home-school, doing a high school curriculum. I began writing poetry when I was about 3 years old, and now have a collection that contains thousands of poems, dozens of illustrations. I have even bound some of my books at home, and a bound anthology of my writing was presented to the Library of Congress during the Fall of 2000. I have also won many awards for my writing, including the Melinda A. Lawrence International Book Award in 1999 for ‘most inspirational work.’ I have a rare form of muscular dystrophy called mitochondrial myopathy, and I also have something called dysautonomia. That means that ‘my automatic’ systems, like breathing, heart rate, body temperature, oxygenation, digestion, and things like that don’t always work well on their own. So, I use extra oxygen all the time, and when I am tired or sleeping I use a ventilator that breathes for me and save energy and move my medical equipment around. My two brothers and one sister died during childhood from the same thing I have, and my mother uses a wheelchair all the time because she has the adult form of this disability.”



Mattie Stepanek With His Mother, Jeni Stepanek,
When He was 11, In Their Home In Upper Marlboro,
 Maryland, USA, On Monday,  November 5, 2001(AP Photos)

Mattie’s life and story had a way of melting one’s heart each time one encountered them. He began writing poetry at the tender age of three. Although he had   this terminal illness, he was able, with his very appealing poems and emotional speeches, to affect the lives of many people around the world.

 Each time I read his poetry or anything written about him, my heart melted, tears came to my eyes, and I longed to meet him, pray for him, say nice things to him, and see him get well and indeed possess in full the life he loved and celebrated so much. It was amazing how a child so sick and dying could inspire so much confidence in others and make them see reasons to “celebrate life” despite the odds.

After watching Mattie’s celebrated appearance on Oprah Winfrey Show, 81-year old Elizabeth Haestie said: “I ‘met’ Mattie for the first time on the Oprah Show. I am an 81-year old English lady, in good health, but sometimes feel somewhat depressed that I don’t have a great many more years ahead of me in this life. But Mattie has knocked all the feelings out of my mind altogether, and I don’t think they will ever return. I am an ‘old soul’ too, Mattie, as you are and I shall remember you and your mother all the rest of my life.”  





Mattie Stepanek With Former United States
President, Jimmy Carter

In 2001, Mattie was appointed the Maryland Goodwill Ambassador for the Muscular Dystrophy Association. A regular face at big events where he spread the message of peace and hope, his enthusiasm and positive outlook despite his fragile state was the challenge many distressed people needed to keep hope alive. He featured regularly at fundraising events aimed at helping the efforts to find a cure for neuromuscular diseases, and offer support to affected children and their families, to go on “celebrating life” till a cure is found.

Mattie Stepanek had told Washington Post in 2001 that he believed a cure would be found for this disease, maybe after his life time. Mattie had been interviewed on Larry King Live on the CNN and on several other top television shows in the United States, and his appearances made tremendous impact on many viewers.  

Heartsongs! That’s one word, (his own coinage) that dominates all of Mattie’s poetry and appears in the titles of all his best-selling collections of poetry. Mattie’s consistent counsel to all was: life may be full of stress and pains, but never allow them overwhelm you; resist despair and don’t allow yourself to sink. Listen instead to your ‘heartsong,’ the profound melody that rings deep down your heart: discover it, follow its rhythm, and with it usher sunshine into your life and that of others.  





Mattie Stepanek With Oprah Winfrey

In 2001, VSP Books collaborated with Hyperion Books to publish Mattie’s maiden book of poems which he called, HEARTSONGS. It was a venture that turned out an outstanding success. Mattie soon became a national bestseller and an American celebrity. With his books, Heartsongs, Journey Through Heartsongs, Celebrate Through Heartsongs and Loving Through Heartsongs (released in 2003 by Hyperion Books), Mattie’s pride of place in American poetry was firmly established. Mrs. Cheryl Barnes, who with her husband, Peter, and their company VSP Books had collected Mattie’s poems which they issued in a paperback in a 2001 collection, told Washington Post that she “had a hard time believing a child could write with such wisdom…He’s bright beyond his years. He is a   truly remarkable child.” 

Former U.S. president, Jimmy Carter, became Mattie’s hero due to his global peace efforts and rigorous disease-eradication campaigns. In September 2001, while Mattie was confined to a hospital bed in the intensive care unit, staff members of the hospital arranged for him a 15 minute telephone chat with Mr. Carter where Mattie raised such issues as the problems in Bosnia and Africa. Surprisingly, he did not talk about his ill-health. Highly affected by this brief encounter with such an exceptional child, Carter decided to write the foreword to Mattie’s next book, Journey Through Heartsongs. But Mattie and Carter were to meet face-to-face when Dianne Sawyer featured both of them on her live television programme, “Good Morning, America.” 

In his emotion-laden eulogy at Mattie‘s funeral service in Wheaton, Maryland, on June 28, 2009, Mr. Carter stunned the congregation with the following words:  “Since I left the White House,” he said, “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.”





Mattie Stepanek

Mattie’s speech during his October 19, 2001 appearance on OPRAH TV Show dwelt on his desire to be a peacemaker in the world and his love for life and poetry. Oprah Winfrey was so moved by the passionate concern of this ailing little boy for peace in a world that had no answer  to his health problems that she had to exclaim, after reading a portion which she said was her favourite lines from Mattie’s poetry: “I think that’s so important, especially now, when everybody is feeling a sense of fear and having been terrorized, to look at what you have in your life and have a sense of gratitude and see the miracles in your life. And you, even though you’re hooked up to all this equipment --and we had to plug you in during the commercial break, give you more oxygen -- you still see miracles everyday in your life.” 

It is sad to note that Mattie Stepanek could not have seen his first birthday let alone dream about writing poetry if he were a Nigerian boy. Where are the medical facilities in today’s Nigeria, especially, after a succession of thieving rulers had passed through town, to sustain the precious life of a boy so sick, so tender, and yet so amazingly gifted and determined?

After my 2003 piece on Mattie, his mother, Ms. Jeni Stepanek, then 47, sent me a very moving email    and said: “I was surfing the net… [and] came across …your article about Mattie, and was so touched by your words. Mattie’s reward in life is the ability to touch others deep in their lives such that it makes a difference to them …Thank you, and perhaps we will meet you during August. Take care, Jeni Stepanek (“Mattie’s Mom).”





Oprah Winfrey: One Of Mattie Stepanek's Big Friend

 I also got another email from an American lady who informed me how happy she was that I could celebrate her hero.  

As, my heart goes out today to wheelchair-bound  Jeni Stepanek and all who loved Mattie Stepanek, I feel compelled to tell every youth in Nigeria reading this piece not to miss the lesson in Mattie’s short life, namely, that no one has any reason to fail in life.

Here was a child who had every reason to relapse into self pity and debilitating passivity, live a miserable and unfulfilled life and pass on unnoticed. But he chose to ignore the obstacles before him, fully realized his potentials within the little time he had, and became a national hero. His last literary effort, a book of essays, entitled Just Peace, is also a best seller.  

So, every youth should look into himself or herself, identify his or her God-given potentials and make the best use of them to excel. Surely, the obstacle most youths complain about would pale to insignificance when compared with Mattie’s, who according to Jimmy Carter had suffered more than anyone he had known.

Yet, he succeeded, and in one of his poems, Heavenly Greetings, he wrote this appeal to God:

Dear God…
I have wondered about
How You will meet me
When I die and come to
Live with You in Heaven.
I know You reach out
Your hand to welcome
Your people into Your home…
 …my mommy…told me that You
Reach out both of Your hands,
And welcome us with
A great big giant hug.
Wow!
I can't wait for my hug, God.
Thank you,
And Amen.


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