He Celebrated the Richness of Life and Heartsongs

[Kooperman]

Muscular Dystrophy Advocate Dies at 13

Wed Jun 23, 9:16 AM ET

By STEPHEN MANNING

ANNAPOLIS, Md. - Mattie Stepanek, the child poet whose inspirational verse made him a best-selling writer and a prominent voice for muscular dystrophy sufferers, died Tuesday of a rare form of the disease. He was 13.

Stepanek died at Children's National Medical Center in Washington, D.C., the hospital said. He had been hospitalized since early March for complications related to the disease that impaired most of his body's functions.

In his short life, the tireless Stepanek wrote five volumes of poetry that sold millions of copies. Three of the volumes reached the New York Times' best-seller list.

"Mattie was something special, something very special," entertainer Jerry Lewis, who chairs the Muscular Dystrophy Association, said in a statement. "His example made people want to reach for the best within themselves."

Stepanek, of Rockville, had dysautonomic mitochondrial myopathy, a genetic disease that impaired his heart rate, breathing, blood pressure and digestion, and caused muscle weakness.

His mother, Jeni, 44, has the adult-onset form of the disease, and his three older siblings died of it in early childhood.

Stepanek began writing poetry at age 3 to cope with the death of a brother. In 2001, a small publisher issued a slim volume of his poems, called "Heartsongs." Within weeks, the book reached the top of the Times' best-seller list, the MDA said.

He wrote four other books: "Journey Through Heartsongs," "Hope Through Heartsongs," "Celebrate Through Heartsongs" and "Loving Through Heartsongs."

His poems brought him admirers including Oprah Winfrey and former President Carter and made him one of the best-selling poets in recent years.

Stepanek was hospitalized many times over the years. He rolled around his home in a wheelchair he nicknamed "Slick," and relied on a feeding tube, a ventilator and frequent blood transfusions to stay alive.

In the summer of 2001, Stepanek nearly died from uncontrollable bleeding in his throat and spent five months at Children's National. When it seemed he would not survive, the hospital got in touch with a Virginia publisher on his behalf.

Stepanek and his mother had sent the book to dozens of New York publishers, all of whom rejected it, according to Peter Barnes of VSP Publishers. Barnes said he was caught off guard when he read the work.

"I was stunned. Some of it was really good," he said Tuesday. "It was very perceptive and thoughtful."

VSP Books printed 200 copies of "Heartsongs" to be handed out to friends. But after a news conference publicizing the book, interest exploded. "Heartsongs" went on to sell more than 500,000 copies.

"Mattie rallied after that," Barnes said. "He went from being on his death bed to becoming this huge publishing success."

Despite his condition, Stepanek was upbeat, saying he didn't fear death. His work was full of life, a quest for peace, hope and the inner voice he called a "heartsong."

"It's our inner beauty, our message, the songs in our hearts," he said in an interview with The Associated Press in November 2001. "My life mission is to spread peace to the world."

He is survived by his mother.

http://news.yahoo.com/news?tmpl=story&u=/a...s/obit_stepanek

http://www.mattieonline.com/

[Umma]

Very sad. What a great example to be set by someone so young and in such a tragically short lifetime.

[Shawn]

It's never okay when someone that young passes.

[Kooperman]

A Larry King interview with Mattie when he was 11 years old, in 2002:

http://www.cnn.tv/TRANSCRIPTS/0204/17/lkl.00.html

Mattie with Lance Bass

[DudeAsInCool]

The kid had more insights to life than most people do in a lifetime

[Kooperman]

This brave little intuitive and I shared the same birthday, July 17, but he didn't get the chance to see anywhere as many of them as I have. The inclination is to moan about how unfair life can be, but I bet Mattie wouldn't waste time doing that. There are just too many good things to celebrate about existing, things that almost all of us whisk right past in our mad dash toward whatever we covet. The moment was what Mattie coveted and he could mine gold from every one he had. I'll be thinking about him this July 17, and probably every one that I have left.

[Kooperman]

Carter, Mourners Bury Beloved Young Poet

By STEPHEN MANNING

WHEATON, Md. - Former President Carter joined more than a thousand mourners Monday at a funeral for a beloved child poet, remembering little Mattie Stepanek as "the most extraordinary person I have ever known."

Stepanek, whose inspirational verse made him a best-selling writer and a prominent voice for muscular dystrophy, died last week of a rare form of muscular dystrophy that had plagued him throughout his 13 years. He was buried next to his three siblings, who died of the same disease, all at young ages.

Carter, who corresponded with Stepanek for three years, gave the eulogy.

"I have known kings and queens, presidents and prime ministers," Carter said. "But the most extraordinary person I have ever known in my life was Mattie Stepanek."

Four firefighters gingerly lifted a small wooden coffin covered with the United Nations flag from the back of a fire truck outside St. Catherine Laboure Catholic Church.

On the casket was a bumper sticker: "Be a peacemaker."

Stepanek tried to convey that message in his best-selling books and thorough his work as an advocate for the Muscular Dystrophy Association. His five volumes of poetry sold more than a million copies.

Carter and Stepanek met in 2001 when it appeared Stepanek was near death. Carter made a surprise visit to his hospital room as a last wish for the boy.

Stepanek eventually recovered. He later sent Carter a series of letters in which he discussed becoming a peacemaker and proposed that he and Carter write a book together called "Just Peace."

Carter said he was impressed with Stepanek's knowledge of international affairs, recalling how the boy was moved to tears by the war in Iraq because he thought world leaders had not tried hard enough for peace.

Also speaking briefly at the funeral was Oprah Winfrey, who featured Stepanek several times on her talk show.

Many of the 1,300 people who filled the church had met Stepanek through his charity work.

In the church, men with pony tails and beards filled several pews, wearing leather vests with Harley Davidson logos. The motorcycle company and Harley owners groups work with the MDA. Firefighters who had also contributed to the charity filled the funeral procession, marching in dress uniforms.

Some mourners never knew Stepanek but came anyway.

Roseanne Mangarella, a preschool teacher in Philadelphia, was given a copy of one of Stepanek's books and later used it in class.

"My heart was telling me I had to help come celebrate this," she said as she stood in line to enter the church. "This is my way of meeting him."

[janett999]

its a shame that someone this young, and with soo much good to share is taken from us!

may his soul rest in peace!

thx for the link to this koop.