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Mattie and Jeni Story

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Jeni and Mattie Stepanek

By James A. Hawkins

Jeni and Mattie Stepanek are the two most courageous people I have ever known. Before he succumbed to the ravages of muscular dystrophy at age thirteen, Mattie was known internationally for his wisdom, haunting and whimsical poetry, and as a proponent for world peace. Jeni has suffered from the same illness for more than twenty years. She lost her first three children to MDA as infants. She supported Mattie all his life constantly, night and day. The two were almost inseparable.

Before he was five, Mattie had written several hundred poems, and had five books published — all N.Y. Times best sellers.

Mattie was hosted by Oprah Winfrey on her show, and became her close friend. He was Jeanne Myers’ first hero on her “My Hero” world network.

Jeni and Mattie were strong supporters of CHI. They both testified at several US Congressional hearings on behalf of CHI and the Children’s Program for All-inclusive

Coordinated Care (ChiPACC).

They both loved “Fantasy Flight”, an annual December event at Dulles Airport, created jointly by CHI and United Airlines volunteers. Soon, Mattie became the “Head Elf” and was beloved by all the other volunteers.

Mattie was invited by Jerry Lewis to join him in his annual telethon for a cure for Muscular Dystrophy — which raised millions of dollars. Despite all early prognoses, Mattie survived – to the benefit of all of us – until just before his fourteenth birthday. He died in Jeni’s arms at Children’s Hospital, where he had been treated periodically since birth.

At his funeral, Mattie was transported to and from the church on a fire engine, by his many friends from local fire departments. President Jimmy Carter gave personal testimony to his greatness, as did Oprah.

The city of Rockville, MD has dedicated a new park across the street from Mattie’s last home. A bronze statue of Mattie with his dog Micah watches over The Mattie J. T. Stepanek Park, and greets its many visitors.

 

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