June 22, 2005

ON A TELEVISED TRIBUTE TO MATTIE STEPANEK

One year ago on this date, MDA lost a great champion in the fight against neuromuscular diseases, child poet and best-selling author Mattie Stepanek. On June 22, 2004, shortly before his 14th birthday and halfway through his third remarkable term as MDA National Goodwill Ambassador, Mattie died from complications of mitochondrial myopathy.

	MDA Board Member Jann Carl will serve as host of “Play After Every Storm: Remembering Mattie Stepanek,” which pays tribute to the late child poet. The special will feature interviews with Mattie’s mother, Jeni Stepanek, accompanied by her service dog, Micah.

Many of us are still coming to grips with the reality of losing Mattie. This tragic loss has been hardest for his mother, Jeni Stepanek. Prior to Mattie’s death, Jeni also lost Mattie’s three siblings, Katie, Stevie and Jamie, to the same disorder. It wasn’t until after the birth of all her children that Jeni found out that she is affected by the adult form of the disease.

When I wrote about Mattie’s death a year ago, I said it seemed that Mattie and Jeni were so close that it’s almost as if they shared one soul between them. Jeni has expressed her agreement with that sentiment, adding: “I miss that part of my soul.”

Those who loved Mattie and miss him will be eagerly awaiting the publication this summer of his sixth and final volume of poetry, “Reflections of a Peacemaker: A Portrait Through Heartsongs.”

MDA is currently producing a 30-minute television special paying tribute to Mattie’s life. It’s called “Play After Every Storm: Remembering Mattie Stepanek,” and is slated to air on MDA “Love Network” stations across the country in the weeks preceding our 2005 Jerry Lewis MDA Labor Day Telethon.

The host of the special will be MDA Board Member and National Telethon Co-Host Jann Carl. After getting to know Mattie and Jeni from her work on the Telethon, Jann became a close family friend and, in fact, was one of the speakers, alongside former President Jimmy Carter and Oprah Winfrey, at Mattie’s funeral.

	Jeni Stepanek, mother of late MDA National Goodwill Ambassador Mattie Stepanek, has an adult-onset form of the disease that took the lives of Mattie and his three siblings, Jamie, Katie and Stevie. Stepanek serves as an MDA National Vice President.

Jann’s interview segment with Jeni will touch upon many aspects of Mattie’s life: the development of his poetic gift; his admiration for Jimmy Carter and his desire to be a peacemaker; how Mattie dealt with becoming a celebrity; and Mattie’s gratitude to the many people who support MDA’s fight against neuromuscular diseases.

Jeni will also speak frankly about the devastating nature of Mattie’s disease and the anguish he and Jeni went through as his condition inexorably worsened.

And although Mattie was often called a hero or champion, Jeni says he thought of himself rather as an ambassador or messenger, and that people who responded to his call and rallied to MDA’s support were the real champions.

In the opening moments of “Play After Every Storm,” Jann Carl says: “The boy who faced challenges beyond our comprehension, always doing so with grace and wisdom, continues to inspire us, reminding us to play after every storm. His Heartsongs resonate more powerfully today than ever before.”

	Large-scale reproductions of artwork Mattie created to illustrate his poetry books form an effective backdrop for "Play After Every Storm: Remembering Mattie Stepanek," featuring Jann Carl, Jeni Stepanek and service dog Micah.

Please check your local listings to see when “Play After Every Storm: Remembering Mattie Stepanek” will be shown in your area. If you can't find it listed, please ask your local MDA “Love Network” station to schedule it.

With every best wish . . .

The Ross Report Archive