scrapbook

Mattie J.T. Stepanek (1991-2004)

FOR OUR WORLD

We need to stop.
Just stop.
Stop for a moment...
Before anybody
Says or does anything
That may hurt anyone else.
We need to be silent.
Just silent.
Silent for a moment...
Before we forever lose
The blessing of songs
That grow in our hearts.
We need to notice.
Just notice.
Notice for a moment...
Before the future slips away
Into ashes and dust of humility.
Stop, be silent, and notice...
In so many ways, we are the same.
Our differences are unique treasures.
We have, we are, a mosaic of gifts
To nurture, to offer, to accept.
We need to be.
Just be.
Be for a moment...
Kind and gentle, innocent and trusting,
Like children and lambs,
Never judging or vengeful
Like the judging and vengeful.
And now, let us pray,
Differently, yet together,
Before there is no earth, no life,
No chance for peace.

September 12, 2001
Matthew Joseph Thaddeus Stepanek
"Hope Through Heartsongs"

US child poet dies after illness

A US child poet and advocate for muscular dystrophy patients has died of a rare form of the disease.

Mattie Stepanek, 13, died in Washington on Tuesday, a hospital statement said.

Stepanek, of Rockville, Maryland, began writing poetry at three to cope with a sibling's death - and produced five volumes that sold millions of copies.

Since 2002 he had served as the goodwill ambassador for the Muscular Dystrophy Association, which described him as "something very special".

"His example made people want to reach for the best within themselves," said the association's chairman, the entertainer Jerry Lewis.

'Life mission'

Stepanek had dysautonomic mitochondrial myopathy, a genetic disease that had affected him since birth.

His mother has a form of the condition, and his three older siblings died of it in early childhood.

In 2001, a small publisher issued a volume of his poems, called "Heartsongs".

Three of his volumes reached the New York Times newspaper's best-seller list, the Associated Press reported.

As the Muscular Dystrophy Association's goodwill ambassador, he spoke at events across the US and on TV talk shows with hosts Oprah Winfrey and Larry King

Despite his illness, Stepanek was said to have been upbeat.

"It's our inner beauty, our message, the songs in our hearts," he said in an interview in 2001.

"My life mission is to spread peace to the world."

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Mattie's Homepage

Mattie J.T. Stepanek is a 13-year-old young man who was born with a rare neuromuscular disease called dysautonomic mitochondrial myopathy. His disease is one of the 43 types of diseases being researched by the Muscular Dystrophy Association.

Mattie has a sister, Katie, and two brothers, Stevie and Jamie, who each died during early childhood from this same infant onset disease that affects Mattie. Mattie's mother, Jeni, has the adult onset form of this disease. She did not know that she would ever have the disease, or that she would pass such a disease on to her children until after she gave birth to them. Mattie lives with his mom and his service dog, Micah, in Maryland.

Even though Mattie's form of this neuromuscular disease is a mutation and very, very rare and difficult to understand, his doctors have learned a lot about what it does to Mattie's body and some of the ways to help Mattie stay as healthy as possible. Mattie uses a wheelchair to get around, like his mom, Jeni. But he also needs a trach (a breathing tube in his neck/trachea), a ventilator (machine that breathes for him), lots of extra oxygen, a Broviac (tube into his heart for medicines and blood products), foot braces, and lots of other equipment. It may sound like a lot of stuff for a kid, but Mattie really knows how to "celebrate life" and "play after every storm."

One of the things Mattie has done to help him cope with loss and continue celebrating life is to write. Since the age of three, Mattie has been dictating, recording, and writing poetry, short stories, and essays about many topics, such as grief, nature, love, disability, hope, life, and peace. He put together his first collection of poetry at age five for a school contest. At age 11, he became a New York Times bestselling author when his volumes of poetry were published. Now, he has had five books of "Heartsongs" poetry collections reach the New York Times bestseller lists. His second book, Journey Through Heartsongs, reached all the way to number one!

In addition to writing, Mattie loves public speaking. In his role as the National Goodwill Ambassador for the Muscular Dystrophy Association (MDA), Mattie does a lot of speaking about how the MDA helps kids and adults with neuromuscular diseases.

He also likes to speak about peace efforts and global tolerance. Mattie has spoken to school children and business leaders, medical personnel and church groups, fire fighters and Harley Davidson riders, all across America. Mattie loves talking to anyone who loves to listen, and then ask questions! One of his favorite speeches was when he got to introduce his hero, Former President Jimmy Carter, at the Kennedy Center in Washington, DC.

Mattie has also shared his messages of hope and peace on many television programs. He has been on the Oprah Winfrey Show, Larry King Live, Good Morning America, Primetime, The Today Show, and many other programs many times. Every year, he also helps with the Jerry Lewis Labor Day Telethon. In 2002, he drove cross country with his mom, and friends, Sandy and Chris, to be in Los Angeles for the Telethon.

He loved getting to see his country coast to coast from the van. In 2003, he was unable to travel because of a decline in his health, so he enjoyed co-hosting all 21 hours of the local Baltimore, MD station telethon.

Mattie feels very lucky to have met many wonderful people during his journey through life. He has become close friends with lots of great people, including Jimmy Carter, Oprah Winfrey, Larry King, Christopher Cross, Lance Bass, and Billy Gilman. During 2003, Mattie and Billy Gilman collaborated on a CD project, Music Through Heartsongs. On the CD, Billy sings 12 of Mattie's poems that have been put to various styles of music, including Celtic, soft rock, Hawaiian, country, jazz, and pop-Christian style. One of his favorite tracks, I AM/Shades of Life, was made into a music video, where Mattie has a cameo.

Mattie also feels very blessed just to be alive at age 13. Children born with his disease do not usually live very long. Mattie knows that each day is a gift, and he makes the most of it. He says he gets his strength from God and his mom, and also from the people that become part of his circle of life. "People tell me I inspire them. And that inspires me. It's a beautiful circle, and we all go around together, with and for each other. What a gift," says Mattie.

Posted by thinkum at June 23, 2004 01:25 PM