This kid was amazing.
Next time your feeling sorry for yourself, remember Mattie. Next time you think you're having a bad day, remember Mattie.
Here was a kid who had been facing death his whole life, watching three siblings die before him from the same disease that was destined to take him.
Through it all he remained nothing but positive and clear-headed, writing his poetry and spreading his message of hope.
Sure, his story has been Oprah-ized. Sure, he had been known to cavort with bad pop stars. Maybe he was no Yeats. It doesn't matter.
This was a young boy who displayed intelligence way beyond his years while maintaining an incredibly upbeat attitude for someone faced with such adversity. Pardon me for getting sappy, but he really was amazing and I am sad to see him go.
R.I.P. Mattie.
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Poet Mattie Stepanek inspired others
'Heartsongs' author is dead at age 13
By Patricia Meisol
Sun Staff
Originally published June 23, 2004
Mattie Stepanek, the 13-year-old Maryland boy whose poetry and message of peace captured the hearts of millions, died yesterday at a Washington hospital from complications due to a rare form of muscular dystrophy.
He began writing poetry at age 3, partly as salve for his grief over a brother's death from the same disease. In 2001, his slim book of poetry, Heartsongs, was published to fulfill the dream of an ailing child and became an international best seller.
The bright-eyed boy, whose big, dimpled smile and square glasses made Oprah Winfrey cry when he wheeled his electric chair onto her television show in October 2001, used his rise to fame to spread a message of hope.
His personal philosophy, "remember to play after every storm," developed from an early age, and stood him through several near-fatal episodes of his disease. In summer 2001, doctors at Children's Hospital in Washington warned that even a laugh or cough could cause his damaged windpipe to collapse, leading to death by suffocation. They could find no explanation for his improvement several months later.
And few could have predicted, either, that Mattie's book of poetry, published that summer by a small Virginia publisher of children's books -- to fulfill his last wish -- would shortly rise to the top of The New York Times best-seller list.
"You always have to remember to celebrate," he wrote, "because that's what charges you up to get through another life storm."
The Rockville boy was born in 1990 and wasn't expected to live more than 24 hours. He attended public school through fourth grade, despite being forced to lug an oxygen canister behind him, and when his illness worsened, he was home-schooled by his mother, Jeni Stepanek, 44, a doctoral candidate at the University of Maryland. He wrote poetry and filled notebooks with his thoughts regularly.
While in school, he earned a black belt in martial arts, climbed trees and served as playground mediator. He lost three siblings to mitochondrial myopathy, a rare form of muscular dystrophy, which weakens the body's major functions and makes it difficult to breathe.
The young boy's attitude despite his hardships led to friendships with many national figures, including poet Maya Angelou and former President Jimmy Carter, who wrote the introduction to Mattie's next book of poetry and who regularly spoke with him. Mattie published five collections of poems.
Beginning in 2002, he toured the country as national spokesman for the Muscular Dystrophy Association, which mourned him yesterday.
"Mattie was something special, something very special," said MDA national chairman Jerry Lewis. "His example made people want to reach for the best within themselves. It was easy to forget how sick he was because his megawatt personality just made you want to smile."
In his poetry, Mattie saw his life after death as very similar to his life on earth. "I want to be a child in Heaven," he wrote, "I want to be a hero in heaven, and a peacemaker, just like my goal on earth."
He leaves his mother, who has the adult-onset form of muscular dystrophy, his service dog Micah and friends.
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