It's been more than a year since best-selling poet, peacemaker and MDA spokesman Mattie J.T. Stepanek died.
Although Mattie lost his battle with mitochondrial myopathy on June 22, 2004, just shy of his 14th birthday, in the midst of his third term as National Goodwill Ambassador, he still is an ambassador for MDA and one of its most prominent voices.
Several projects honor Mattie's life and legacy, while his mother, Jeni, carries out her son's mission of working for peace, hope and an end to neuromuscular diseases.
A television special about Mattie was aired on MDA's Love Network stations in August and early September. "Play After Every Storm: Remembering Mattie Stepanek" features Jeni Stepanek and is hosted by Jann Carl, weekend anchor and correspondent for "Entertainment Tonight."
The 30-minute tape will be shown during the MDA Telethon, and Jeni Stepanek will appear on the broadcast.
"Even though Mattie's body has died, it's my hope that Mattie's spirit continues to serve as an ambassador for MDA," Stepanek said as the show was being taped. "He knew that his role was to advocate for MDA, reminding people about their gifts of hope, and funds for equipment, camp and research toward cures."
Mattie's sixth and final volume of poetry, Reflections of a Peacemaker: A Portrait Through Heartsongs, was released on Aug. 23 by Andrews McMeel Publishing.
The new book, Stepanek said, is "so much more than poetry." It's a biography in poetic words that allows us to see into Mattie's life. We really get to see how he viewed the world in eight chapters.
The book includes Mattie's last poem and 250 previously unpublished poems, photographs and artwork spanning the decade from age 3 when he began writing. Oprah Winfrey penned the foreword, and the book includes personal tributes to Mattie from MDA Board member Carl, Maya Angelou, Larry King and President Jimmy Carter.
|At the park's groundbreaking ceremony, Jeni and Micah were joined by (from left) Andy Gordon, president of King Farm Citizens Assembly; Burt Hall, director of Rockville Recreation and Parks Department; and Bob Balkam, a neighbor and family friend.|
A portion of the proceeds from sales of Reflections of a Peacemaker will be donated to the MDA Mattie Fund.
Stepanek also has prepared a second book, Just Peace: A Message of Hope, a collection of essays and e-mail correspondence, which Mattie wrote with the support and collaboration of Carter. It's set to hit bookstores in early 2006.
In the Stepaneks' hometown of Rockville, Md., the mayor and city council voted unanimously to create the Mattie J.T. Stepanek Park, a 26-acre facility in the King Farm community.
On June 18, about 200 family members, neighbors and friends joined local and state officials, including Maryland Lt. Gov. Michael S. Steele and U.S. Rep. Chris Van Hollen, to break ground for the park. Plans call for the fully accessible park to have several playing fields and a dog park. Mattie's writing will be displayed on plaques throughout the park, Stepanek said.
The park's central feature will be a statue of Mattie, with his service dog, Micah, beside him, sitting in his wheelchair at a chess table. Across from Mattie's statue will be an empty chair with a plaque bearing his words: "Peace is possible It can begin simply over a game of chess."
Stepanek and Micah visit the site of the park every day, and they look forward to sitting with Mattie again one day. "It's very exciting," she said. "I can't wait to have Mother's Day with my son and talk peace with Mattie."
MDA created the MDA Mattie Fund in response to the outpouring of public grief and support following the death of its popular ambassador. The fund, established to promote research on childhood neuromuscular diseases, exceeded $1 million in its first year.
Mattie's dear friend, Katherine Carl Sears, 13, raised nearly $5,000 for the fund.
After Mattie died, "I decided that I wanted to make a difference [for MDA] and be a part of the effort," said Katherine, who is Jann Carl's daughter and got to know Mattie during the 2002 MDA Telethon.
In May, MDA announced the creation of the Mattie Stepanek Postdoctoral Research Fellowship. The grant provides a two-year stipend to a researcher specializing in mitochondrial myopathy.
The disease, which also affects Jeni Stepanek and took the lives of all four of her children, causes generalized muscle weakness and can affect respiration, heart rate, blood pressure, speech, swallowing and digestion.
In addition to her duties as an MDA national vice president, Stepanek is an author, Ph.D. candidate and faculty research associate at the University of Maryland in Baltimore.
She often speaks publicly in behalf of MDA's efforts to help families like hers.
"There are days when I am blessed with opportunities to share stories and lessons learned from my children," she said. "Carrying on Mattie's work gives me a reason to get up each day. Sometimes I ask myself if I'm doing enough."
Together, Jeni and Mattie are doing plenty. The Johnson & Johnson/Rosalynn Carter Institute Caregivers Program created the Mattie J.T. Stepanek Intergenerational Scholarship to support education in intergenerational caregiving. A Mattie J.T. Stepanek Pediatric Intensive Care Unit is planned at Children's National Medical Center in Washington, where Mattie spent many months when his disease was in crisis.
|A portion of the proceeds from Mattie's sixth and final volume of poetry will be donated to the MDA Mattie Fund.|
In March, Stepanek accepted the Natalie Heineman Award on Mattie's behalf from the Child Welfare League of America. The award honors outstanding humanitarians and service to children.
The ambassador's mother served as a keynote speaker at the third annual MDA Heartsongs Gala on Feb. 26 in Washington. The black-tie gala raised an outstanding $837,000 for MDA research and service programs.
"He wasn't just a kid," Katherine Sears said of her friend. "He was an angel, a gift sent from God to spread the word of peace and love."
Carl said, "He left us all with marching orders, and I have a lot of work ahead of me if I want to honor Mattie's memory."
At the end of the taping in Tucson, Stepanek recalled her son's final speech, made at the 2004 Heartsongs Gala.
Mattie said, "I am an ambassador, a messenger, a reminder that what we are doing is giving the gift of hope Even if I am not here, you must honor those who are committed to hope. You must gather and celebrate the gift of life, and continue to be a part of the effort."