Maryland Boy to Represent MDA

by Tara Wood

He's a best-selling author ... he regularly swaps e-mails with Oprah Winfrey ... and President Jimmy Carter calls him "one of my best friends."

He's also a huge fan of songwriter "Weird Al" Yankovic, loves to play video games, and has an impressive rock collection.

Such is the amazing world of Matthew J.T. Stepanek, the MDA 2002 National Goodwill Ambassador.

Mattie, an 11-year-old from Upper Marlboro, Md., will represent individuals and families served by MDA at a variety of appearances this year, including fund-raisers and meetings of national MDA sponsors.

Mattie, who last year served as Maryland's MDA Goodwill Ambassador, will succeed Sarah Schwegel, an 8-year-old from Kirkwood, Mo., who held the national post in 2001.

He's more than excited to take on the role, displaying eagerness that was evident in his reaction when Katie McGuire, Towson, Md., MDA health care services coordinator, called to inform him of his appointment.

"After she told me I said, ‘hold on please,' and I put down the phone, and I screamed for about 30 seconds, and then I put it back up to my ear and said ‘Yes, Katie, thank you very much!'"

Unlike the dozens of MDA national ambassadors before him, Mattie will schedule his MDA work around book signings, national media appearances and other demands on a best-selling author.

After all, he is the author of two poetry books, Heartsongs and Journey Through Heartsongs, which have been called the most successful volumes of poetry to be published in the last three decades.

The story about Mattie's remarkable life and how his books have become nationwide hits has been widely chronicled in newspapers, magazines and on television.

ONCE UPON A TIME, THREE WISHES CAME TRUE

His story, one that seems to get more amazing each day, goes like this:

Mattie has mitochondrial myopathy, a disease that also affects his mother, Jeni, and took the lives of his brothers, Stevie and Jamie, and sister, Katie. It's a gradually progressive disease that causes generalized muscle weakness and the inability to walk. Mattie uses a motorized wheelchair, a ventilator and supplemental oxygen, and his mother also uses a motorized wheelchair.

The disease has brought various medical challenges during his young life, including a multi-month stay at Children's Hospital National Medical Center in Washington last spring and summer.

Things began to look especially bleak for Mattie in June, so hospital staffers scrambled to fulfill his three life wishes: to talk peace with Jimmy Carter, have the poems he'd been writing since toddlerhood published in a book, and see his poetry read on TV by Oprah Winfrey or Rosie O'Donnell.

Jimmy Carter phoned Mattie (whose ambition is to be a peacemaker) in the pediatric ICU and the two chatted for 15 minutes. A local publisher, VSP Books, came through with 2,000 copies of Heartsongs, a collection of poems he wrote when he was 5. And not long after came queries from Oprah and Rosie (and interviews with People magazine, USA Today, "Good Morning America" and many more national media outlets).

He also received a special phone call from MDA Board member Ed McMahon, while McMahon was in Washington speaking to Congress in behalf of the MD-CARE Act.

Mattie met President Carter on the set of "Good Morning America" in December, and escorted First Lady Laura Bush on a tour of the Children's Hospital National Medical Center in Washington.

Soon, Mattie began to experience what doctors called a miraculous, spontaneous recovery from his acute illness, and his overall condition stabilized.

But that was only the beginning of the miracles. Around this time, word-of-mouth sparked an unthinkable demand for Heartsongs, and then its sequel, Journey Through Heartsongs. A live conversation with Jerry Lewis in the closing hour of the MDA Telethon on Labor Day introduced Mattie to tens of millions more Americans.

After Sept. 11, a nation starved for hope and healing began to gobble up Mattie's sweet, hopeful and profound writings. Early sales totaled over 200,000 for each book, numbers that thrust the volumes onto the New York Times best-seller lists for fiction for several weeks. Some experts estimate that his book sales will eventually hit the millions.

Mattie has since been on "The Oprah Winfrey Show" (and got to her Chicago studio via private jet, courtesy of Oprah), made several appearances on "Good Morning America," met and exchanged hugs and handshakes with Carter, and spent a morning with First Lady Laura Bush. Time magazine even published an item about him carrying the headline "Can a Boy Save Poetry?"

To boot, Mattie and VSP have teamed with a new publisher, Hyperion, which is based in New York. Mattie's third book, Hope Through Heartsongs, is due out in April.

It's enough to make anyone's head spin. But beyond the swirl of excitement and the steady shine of the national spotlight, there's still Mattie, a typical 11-year-old boy.

JUST A ‘NORMAL KID'

"I play with my Legos and I read a lot and I write a lot," Mattie agreed, talking about his hobbies that go along with video games and rock collecting.

Mattie hates science, sometimes has to be reminded to do things, and has plastered the walls of his bedroom with pictures of Emma Watson, the young British actress who played Hermione Granger in "Harry Potter and the Sorcerer's Stone," according to Jeni Stepanek.

"He's a normal kid," insists Jeni, who homeschools her son.

He loves jokes, studying literature and American history, and playing with his best friends and neighbors Nick and Ben Mox. Mattie has also earned a first-degree black belt in karate, an activity that he said he continues to do "in spirit" since his body can no longer take part.

And the "Weird Al" thing?

"I just think the parodies he writes are really funny. He is a clever, clever person, and I see the goofiness of him," Mattie said.

But it's the details that begin to separate him from other 11-year-olds. For instance, reading: He loves the classics and has read Moby Dick at least 10 times, read the original Treasure Island probably 50 times, gobbled up novels by Hemingway, Dickens and even ventured into Shakespeare, Jeni said.

A recent trip to the library saw him check out 10 biographies of famous peacemakers and people from the civil rights movement, plus two kids' books that were pure fantasy, Jeni said.

He's just as busy with his writing as with his reading. Mattie estimates he's written thousands of poems, and gets his ideas from everyday life experiences. His contract with Hyperion calls for three books this year, and Mattie said he doesn't feel any pressure because writing is so enjoyable for him.

WRITING AND SPEAKING: ALL IN THE FAMILY

Mattie also has a knack for public speaking and organizing information, something that's been nurtured by watching and working with his mother, herself a frequent public speaker.

Jeni Stepanek has a milder form of mitochondrial myopathy than her son's. Both cope with their disorders by writing and enjoying life.

Jeni, the 2001 MDA Personal Achievement Award recipient for Maryland, is a faculty research associate for the University of Maryland where she's close to finishing a Ph.D. Her doctoral degree will be in early childhood special education, with a specialization in anticipatory grief. She gives talks and writes extensively on subjects relating to children with disabilities and their families.

Mattie has always accompanied her to conferences where she presents her research, and often got involved in discussions.

Eventually, when he was 7 or 8, he was invited to give his own presentation about student self-representation and the Individual Education Plan process. Jeni helped him organize the hour-and-a-half presentation, but Mattie practiced extensively and got the highest rating at the conference.

"He's very comfortable in public," Jeni said.

Jeni's own experience of losing three children to a genetic condition she didn't then know she had, has had much influence on her professional studies.

She was close to completing a Ph.D. in child psychology when her first child was born in 1985 and became very ill. She took a leave of absence to care for her children, but never renewed those studies.

Instead, she started from scratch to re-earn a master's degree and now her doctorate. Her research focuses on helping families deal with grief on a long-term basis.

"I think we know well what to do with families in crisis, but what do we do for families who live many, many years and know that their child has something that will in all probability prevent them from living to adulthood or living a typical life span?" she said.

While there are never easy answers for the mind-boggling challenges that families like hers face, Jeni has this to say about her way of coping: Everything in life is a choice.

"The easy choice is to be frustrated, depressed, angry and bitter. The more difficult but the more rewarding choice is to do something with whatever your life holds," she said.

"The way I do that is, I have to not focus on why? Why me? And why my children? Focus on how. It doesn't mean you don't visit the whys. I clearly have to face the whys of my life. But I spend more time thinking, ‘How can I face this day?' And by doing ‘how,' you can answer ‘what, when, where, who,' and you get all your specific things done. That leaves more time to enjoy life."

WORDS OF HOPE AND STRENGTH

Mattie's message to other children is just as hopeful and brave.

"I'd like to say to the kids without a disease, live life to the fullest and don't be afraid of a kid in a wheelchair. They like to talk. They're just like you but they're extremely sick," Mattie said.

"And to those with a disease, it's nice to answer questions, and especially [questions] little kids ask. And to live life to the fullest and to remember to play after every storm," he said. "Remember that even if they are sick and stuck in a wheelchair or whatever, they still should be proud that they can say, ‘I'm alive.'"

He knows that being MDA's national goodwill ambassador will give him an additional platform. While telling his audiences how vital MDA's help is to families like his, he'll also spread his message of peace, and never giving up hope.

Perhaps it will be one more way for him to teach us all that we'll know happiness if we listen to our heartsongs: Mattie's name for our inner beauty and spirit that we can hear if we just take the time to listen.

"Live your life to the fullest. Live your life — forget the disease. You need to follow your heartsong. You are just like everybody else — if you believe it, you can do anything. Like, my hero Jimmy Carter's life philosophy, ‘If you want something bad enough, don't give up, and you will achieve it.'"  

To find out more about Mattie and keep up with the latest events in his schedule, go to www.mda.org/mattie.