July 05, 2004 12:00 PM

In 2001 Mattie Stepanek became a literary sensation with the publication of his poetry collection, Heart-songs. Despite a lifelong battle with a rare form of muscular dystrophy, he went on to publish four more volumes and become an eloquent advocate for children and world peace. On June 22 he died at 13. His mother, Jeni, 44, who suffers from a form of the same disease that has now killed all four of her children, spoke to PEOPLE about her son:

It’s been a tough year. Mattie’s heart stopped for 45 minutes in March, and nobody thought he’d wake up again. Yet he woke up, told jokes, talked of peace and astounded many people. His body wore out, but his spirit did not. He died after 1:30 p.m. this afternoon, and his body was still warm at 6 p.m.—his spirit was that strong. He suffered greatly over the last two weeks, but the last 10 minutes of his life were incredibly peaceful. I climbed out of my wheelchair and into bed with him and just held him, and I told him I loved him. He looked me in the eye and stopped moaning. I said to him, “You’re everything God wanted you to be.”

Somebody once asked Mattie, “How do you want the world to remember you?” And he said as a poet, a peacemaker and a philosopher who played. He always said, “When I die, have a big celebration for me.” His hope was that he planted seeds and made a difference. He helped people understand that peace is a habit and a reality. He lived it.

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