Remember to play after every storm.
Matthew Joseph Thaddeus "Mattie" Stepanek, the courageous little boy who became a best-selling poet and advocate for muscular dystrophy awareness on network talk shows including "Oprah," "Larry King Live" and "Good Morning America," has died. He was 13.
Mattie died Tuesday at Children's National Medical Center in Washington, D.C., of dysautonomic mitochondrial myopathy, a rare form of muscular dystrophy that impairs breathing, digestion and heart rate. Three older siblings, Jamie, Katie and Steven, died of the disease before age 4, and his mother, Jeni Stepanek, has an adult-onset form that confines her to a wheelchair.
The bespectacled boy was near death many times during his short life. He reported twice seeing angels who beckoned but then "just vanished."
"One of my primary specialists," he told the Indianapolis Star in 2002 when he was invited to appear at the Indianapolis 500, "said I'm 'hanging on the edge of a cliff with one foot hanging over and the other foot on a banana peel.' Right now I feel like the banana peel is under my foot, but I'm steady. Sometimes when I'm very sick, he says I'm 'doing the Electric Slide on the banana peel.' "
In the summer of 2001, doctors were so certain Mattie's death was imminent that they asked him what his final wish was. He had three -- to publish his book of poetry, to appear on Oprah Winfrey's television show as a spokesman for peace and to meet his hero, former President Carter.
Mattie got all three wishes -- and three more years of life in the public spotlight and hearts of the nation.
He subsequently published five books of poetry, which together have sold more than 1.5 million copies -- "Heartsongs," "Journey Through Heartsongs," "Hope Through Heartsongs," "Celebrate Through Heartsongs" and "Loving Through Heartsongs." Last year, teen country singer Billy Gilman released an album, "Music Through Heartsongs -- Songs Based on the Poems of Mattie J. T. Stepanek."
Mattie chatted with Carter by phone, appeared on "Oprah," where he quickly became a favorite, and was named Muscular Dystrophy Assn. national goodwill ambassador. He told Winfrey after the Sept. 11 attacks that he wanted to be a peacemaker.
Mattie proved as adept at television as poetry in appearances on Jerry Lewis' MDA Telethon, Larry King's show, CBS' "The Early Show," NBC's "Today," and ABC's "Prime Time" and "Good Morning America."
In announcing Mattie's death Tuesday, "Good Morning America" host Charles Gibson called the boy "a member of our family." Winfrey often introduced him as her "new friend, poet and peacemaker" and has called him "an angel on Earth." Carter said on "Good Morning America," where he had met Mattie, that the boy "inspired the whole country." Lewis said Tuesday, "Mattie was something special, something very special."
Young Mattie started spouting poetry at age 3, when his brother Stevie was dying. His mother began writing down what he said until he could do it himself.
He adopted the word "heartsong" at age 4 and later described it for interviewers as "your inner beauty, the song in your heart that wants you to help make yourself a better person, and to help other people do the same. Everybody has one."
He had no favorite among the more than 2,000 poems he wrote, he once said, but his "top 10" would include "On Being a Champion," which describes overcoming challenges.
Famous for playing tricks on doctors in the intensive care unit, Mattie said he lived by three philosophies: his own, to play after every storm; his mother's, to celebrate life every day in some way; and Carter's, if you want something badly enough, never give up and you will succeed.
"We all have life storms," he told Chris Cuomo on "Prime Time Thursday" in December 2001, "and when we get through them or recover from them, we should celebrate that we got through it. That's what my life's philosophy means: to remember to play after every storm."
After his parents, Jeni and Greg, watched three toddlers die, learned that any children they had would suffer from "a recessive muscular disease" and decided "no more," Mattie was conceived.
"Mattie defied all birth control. Mattie has a reason to be here," Greg Stepanek told the Washington Post when the boy was 5. The parents subsequently divorced.
Almost two years after Mattie was born, his mother learned of his disease when she was afflicted with the adult form of it. Fewer than 1,000 people in the U.S. are believed to have the disease, although about 1 million have some form of muscular dystrophy.
As Mattie grew up in Upper Marlboro and later Rockville, both in Maryland, his early death was a medical certainty.
"Some people ask me, 'Are you afraid of dying?' " he told Katie Couric on "Today" in May 2003. "I'm not afraid of dying, because I know there's a better place waiting, even though I want to live and do as much as I can here on Earth."
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'On Being a Champion'
A champion is a winner,
A hero ...
Someone who never gives up
Even though the going gets rough.
A champion is a member of
A winning team ...
Someone who overcomes challenges
Even when it requires creative
A champion is an optimist,
A hopeful spirit ...
Someone who plays the game,
Even when the game is called life ...
Especially when the game is called life.
There can be a champion in each of us,
If we live as a winner,
If we live as a member of the team,
If we live with a hopeful spirit,
For life ...
-- Mattie J.T. Stepanek
From "Journey Through Heartsongs," 1999