You should also listen to Billy Gilman's tribute Cd "Music Through Heartsongs: Songs Based on the Poems of Mattie J.T. Stepanek" (dscd)
Here is a short bio of Mattie:
Mattie J.T. Stepanek was 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.
One of the things Mattie did to help him cope with loss and continue celebrating life is to write. Since the age of three, Mattie was 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 loved public speaking. In his role as the National Goodwill Ambassador for the Muscular Dystrophy Association (MDA), Mattie did a lot of speaking about how the MDA helps kids and adults with neuromuscular diseases.
Mattie was very lucky to have met many wonderful people during his journey through life. He became 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 had a cameo part.
Mattie felt very blessed just to be alive at age 13. Children born with his disease do not usually live very long. Mattie knew that each day was a gift, and he made the most of it. He said he got his strength from God and his mom, and also from the people that became 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," said Mattie.
UPDATE ON MATTIE: Mattie died at Children's National Medical Center in Washington D.C. on Tuesday, June 22nd 2004, according to a statement from the hospital. He had been hospitalized since early March for complications related to the disease that weakened most of his body's major functions. Mattie was 13 and is survived by his mom Jeni.
"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."
After the Jerry Lewis Labor Day Telethon, Mattie's site will be updated and maintained in his honor and to keep his messages of hope and peace alive and spreading.
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