June 23, 2004

MEMORIES OF MATTIE

MDA National Goodwill Ambassador Mattie Stepanek died yesterday at Children’s Hospital in Washington, D.C., from complications of the mitochondrial muscular disorder that had affected him since early childhood. Mattie would have been 14 on July 17.

Many things need to be said about this extraordinary young man, whose life and spirit had an immeasurably powerful impact on all of us at MDA, as well as on everyone who came to know him through his beautiful “Heartsongs” series of poetry books and his memorable television appearances.

First, our thoughts must turn to Mattie’s mother, Jeni. At times, it seemed Mattie and his mom were so close they must have shared one soul between them. But the reality is that Jeni must go on without Mattie, as she had to go on after the loss of his three siblings to the same disease.
Although the death of Mattie, after several years of life-threatening medical crises, wasn’t completely unexpected, the reality of the moment is still hard to endure for all of us who loved him. For Jeni, it must be hardest of all. All of us in the MDA family extend to her our love and deepest sympathy on this inconceivable loss.

The first occasion I had to write about Mattie in this column was in August 2000, before Mattie was a best-selling author or a national celebrity. I used that opportunity to reproduce an exquisite essay Mattie wrote about his experiences at MDA summer camp at Camp Maria in Leonardtown, Md.
MDA summer camp is under way this week at Camp Maria and I know Mattie will be foremost in the thoughts of friends such as fellow camper Erin Kiernan, and MDA Health Care Services Coordinators Katie McGuire and Annie Kennedy, and the rest of MDA’s local office staff in the Baltimore/Washington area.

Mattie’s legacy will be a rich one -- preserved in the books he left us -- and in the memories we’ll all carry of him.

Some random memories of my own:

Mattie respectfully referring to International Association of Fire Fighters General President Harold Schaitberger as “Mr. Harold” on the 2001 national broadcast of the Telethon… the poem that Telethon Anchor Ed McMahon, inspired by Mattie, wrote and read on the same Telethon… Mattie’s look of shocked amazement, transforming to joy, when he received a surprise visit from his hero and role model, former President Jimmy Carter, on a segment of “Good Morning America”… Mattie sporting a pair of Larry King-style suspenders when he appeared on the famed talk show host’s program on CNN… and Oprah Winfrey arranging for Mattie to meet the stars of the “Harry Potter” movie series on the set of her show.

I’ll also remember Mattie, in his healthier, happier days, zipping around the backstage area of the 2002 Telethon in his motorized wheelchair, sometimes exasperating his mother who wanted him to conserve his energy, but having a hell of time nonetheless.

Perhaps the moment that will stay with me most was when MDA National Chairman Jerry Lewis broke with a tradition of over three decades and, for the first and only time, sang his signature closing tune, “You’ll Never Walk Alone,” directly to one of “his kids,” Mattie.

I’ll also remember the many things Mattie loved: video games, his service dog, Micah, practical jokes, “Austin Powers” movies, Yu-Gi-Oh! trading cards, the Beatles and numerous books from “The Lord of the Rings” to “Moby Dick.”

Mattie didn’t love the seemingly endless weeks and months he spent at Children’s Hospital, mostly because it meant he was unable to spread his message of peace and do the work he felt he had to do. But he did love the people who took care of him there and who loved him in return.

Mattie did love speaking to people. Whether he was addressing a huge crowd at an MDA “Heartsongs” gala in Washington or an MDA sponsor gathering… hanging out with his Harley-Davidson buddies at a Ride for Life in Pennsylvania… reading poems to admiring fans at one of his popular book-signings… bonding with his close friend, singer and MDA National Youth Chairman Billy Gilman… or joking around with our MDA TV crew who came into his home in Maryland to videotape Mattie’s profile for the Telethon… Mattie was a compelling and unfailingly optimistic ambassador, not just for MDA, but for the human spirit.

I won’t forget that Mattie genuinely believed in peace … not just as a concept but as potential reality for our world. And, with similar depth of conviction, he believed that a medical answer would be found for the disease that affected him and his siblings, indeed for all of the children and adults fighting neuromuscular diseases. He knew that answer might not come in his own time. But he had unshakable faith that it would come, if we believed in it and worked to make it a reality.

Please share with us your thoughts and memories of Mattie Stepanek by e-mail to remembermattie@mdausa.org. You may also choose to honor Jeni’s request for memorial donations to the MDA Mattie Fund to support research into childhood neuromuscular diseases.

Here’s to Mattie Stepanek, and love and peace.

With every best wish...

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