To get his poems read on TV by Rosie O'Donnell and Oprah Winfrey.
Here's the news: The balloon thing works.
Two weeks ago, President Jimmy Carter called Mattie, 10, in the pediatric ICU of Children's Hospital in Washington, and they chatted for 15 minutes. Next, "HeartSongs," a collection of poems Mattie wrote when he was 5, was published in paperback this week. And this week, "The Rosie O'Donnell Show" called and left a message.
Mattie Stepanek and his mother, Jeni |
It doesn't stop there. Mattie has also received calls from CNN, "Nightline," "Today" and People magazine. National Public Radio called President Carter and interviewed him about Mattie.
And Wednesday, when MDA National Vice President Ed McMahon was in Washington speaking to Congress about the need for greater federal funding of muscular dystrophy research, he called Mattie.
Suddenly, Mattie is a hot property.
A wish can be a powerful thing, especially when it's fueled by faith and talent.
Life Storms
Flowing Thoughtfulness
When one person
Is thoughtful to another,
The thoughtfulness
Gets carried on and on.
It is like a river of kindness,
Once blocked by rocks,
That is suddenly opened
By a single person's
Kind thought or act.
The river runs freely again,
And continues to flow,
Moving more rocks and
Reaching the hearts of others.
When one person
Is thoughtful to another,
The thoughtfulness
Gets carried on and on.
The more we get together
And help each other,
The more friendship
There can be throughout
Many different places.
The friendship can begin
Like a small stream
In a single neighborhood,
And then expand throughout
A river of districts, states,
Countries, and even continents.
When one person
Is thoughtful to another,
The thoughtfulness
Gets carried on and on.
Soon, we could have
A whole ocean of friendships,
And that's how
The world was created,
And how
It should always be.
-Mattie Stepanek
5/00
To read more of Mattie's poems, visit www.myhero.com, and look under "Poets" in the directory. |
Mattie, MDA's Goodwill Ambassador for Maryland, has dysautonomic mitochondrial myopathy, which disrupts the body's breathing, processing of oxygen and heart rate. His mother, Jeni, has the adult form of the disease, and it has taken the lives of his two brothers and one sister.
Mattie has been in intensive care for three months because of complications from a tracheostomy. Things haven't been going well, and two weeks ago his doctors decided he needed to have his wishes granted quickly. The hospital's public relations department arranged the call by President Carter and contacted a local publisher, VSP Books, about printing some of Mattie's poems.
Cheryl Barnes, co-owner of VSP Books, thought she was "just doing a nice thing for a kid" when she agreed to the printing. But after reading Mattie's poems, she knew something special was happening. "I had no idea he had such a gift."
The original 200 books were snapped up in minutes at his book signing party, and at least 2,000 more are being printed to meet the sudden demand.
VSP plans to publish a hardcover collection of more of Mattie's poems in late August, and it will available for sale in retail stores.
"The poems he did when he was 5 are sweet, but they don't really represent what he's capable of doing. I was like, 'Wow!'" said Barnes. "Mattie puts everybody's life in perspective."
Mattie's poems resonate with a deep joy of life, coupled with an unblinking acceptance of reality. He intends them to serve a larger purpose than mere entertainment.
"When I grow up I want to be a peacemaker, and I'd like to teach peace to the world through my writing," he explains. His poetry reflects his life philosophy, which is, "Remember to play after every storm. You go through many hard things in life but if you are confident, you'll get through it. Always remember to celebrate because that is what charges you up to get through another life storm."
"Never Give Up Hope"
As MDA's Maryland Goodwill Ambassador, Mattie often reads his poetry at Association fund-raising events, "to rejuvenate people to help fight MD."
Through MDA events, Mattie has also become friends with Harold Schaitberger, general president of the International Association of Fire Fighters and an MDA national vice president.
Mattie has also written some long poems and stories about MDA summer camp, one of which was printed in the Ross Report by MDA Executive Director Robert Ross last August. In 1999 Mattie was awarded the Melinda Lawrence International Book Award, an award named after another young author with a neuromuscular disease.
Because of his hospitalization, Mattie wasn't able to go to camp this year, but camp came to him. An MDA researcher at Children's Hospital appointed himself Mattie's counselor and visited his room every day for a week with different camp activities. At the end of the week, the two released a balloon containing Mattie's traditional three wishes - and suddenly they began to come true.
To other kids with MD, Mattie offers this advice: "Never give up hope. One day we will find a cure. It may not be in your lifetime, but if you can help do something to fight it, eventually we can find a cure and we can all be happy that each of us were part of the effort."
McMahon heard about Mattie's poetry book from an article in The Washington Post and called him up. Getting a call from the man who gives away a million dollars was pretty exciting. "Get out!" Mattie exclaimed when told it was Ed McMahon on the phone.
McMahon told Mattie that the Washington Post article had been added to the day's official Congressional Record.
But at present, phone calls are difficult and e-mail impossible because Mattie is in the pediatric ICU.
| Order Heart Songs: |
 |
Order Heart Songs. The book sells for $11.50. The expanded hard-cover version will be available later September, or early October, 2001. |
Jeni, who uses a power wheelchair, curls up on a three-foot couch in PICU each night in order to stay close to her son. (Jeni is the 2001 MDA Personal Achievement Award recipient for Maryland.)
Due to summer television production schedules, Mattie doesn't know yet whether his third wish will come true -- to have his poems read on the air by O'Donnell or Winfrey -- but he's optimistic. He doesn't seem too surprised by the magnitude of response to "HeartSongs," just by the speed with which it happened. Mattie continues to write poetry, dictating to his mother in between rounds of playing with GameBoy, Lego and X-Men action figures.
"I have a very strong spirit in my religion," he explained. "I trust God more than all the people. I know that He will always be with me to protect me. He saved my life many, many times when I was a baby and even now, which means I have something to do on earth.
"I won't let God down, because He hasn't let me down."
