July 19, 2003

ON MATTIE’S FURTHER ADVENTURES

It’s been, so far, an eventful year for MDA National Goodwill Ambassador Mattie Stepanek, including a prolonged hospital stay that severely tested Mattie’s spirits. But good things have happened, too, including the publication of Mattie’s fifth book of poetry, “Loving Through Heartsongs,” and the CD release of a superb collection of songs based on Mattie’s poems by teen singing sensation (and Mattie’s friend) Billy Gilman. Mattie also enjoyed a terrific week of fun at MDA summer camp. And most recently, on July 17, Mattie became a teenager. Happy 13th Birthday, Mattie!

My friend Harold A. Schaitberger, general president of the International Association of Fire Fighters, has said of Mattie Stepanek: “I have always admired Mattie for his courage, intellect and fire-fighter-like passion to battle the odds and emerge victorious. I am proud to call Mattie a friend. He has wisdom beyond his years and an understanding of the preciousness of life that is quite remarkable.”

Mattie’s disease, a form of mitochondrial myopathy, fills every day with uncertainty. Earlier this year, severe respiratory and other complications of the disease forced Mattie to endure a hospital stay that ultimately would last four months. (Mattie underwent a similar hospitalization two years previously.)

Mattie and his mom, Jeni, are grateful for the excellent care Mattie receives at Children’s Hospital in Washington, D.C. Nonetheless, it’s an almost unbearable frustration for Mattie not to be out doing the things he feels he should be doing.

“Mattie lives to do things,” says Jeni, who’s affected by an adult variation of the same disorder.

Mattie’s “things,” of course, include making personal appearances as a poet and peacemaker and representing MDA in his work as our National Goodwill Ambassador. All of us at MDA can testify that, despite the “downtime” necessitated by his illness, Mattie has done a spectacular job spreading MDA’s message of hope and compassion and winning new friends for the Association.

Shortly after being released from the hospital in June, Mattie Stepanek was able to spend time with his friend, Erin Kiernan. Erin, 14, has Friedreich’s ataxia and will be featured in a video profile on the upcoming Jerry Lewis MDA Labor Day Telethon.

A bright spot during Mattie’s hospitalization came when 15-year-old country singer Billy Gilman decided to adapt some of Mattie’s poems to a musical setting.

“I was nervous in the beginning about making songs out of my poems, if it would work or not,” Mattie said. “But when Billy sent us some samples of the things they were thinking about doing, we thought, ‘This is great.’”

“Music Through Heartsongs” was released on April 15 and was justly hailed as a remarkable collaboration between two outstanding young artists.

Meanwhile, Mattie’s lengthy hospital stay made him worry about the possibility of missing one of his favorite things in the world – a week at MDA summer camp. By June, Jeni and Mattie decided it was time for Mattie to go home, even though he’d still be required to return to Children’s Hospital several times a week for blood platelet transfusions.

Mattie was overjoyed to be reunited with his service dog, Micah, while Jeni was happy to sleep in a real bed again (as opposed to a hospital waiting room). Since coming home, Mattie has been catching up with his favorite cable TV shows, swapping Yu-Gi-Oh trading cards with his friends, checking out the local movie theater and mall, and enjoying treats from his favorite local ice cream parlor.

Mattie was also able to attend an MDA teen support group and -- most happily of all -- MDA summer camp. Dedicated camp volunteers made sure that for one week Mattie had the chance to “just be a kid,” and that included a lead performance in his tent’s comedy sketch for the camp talent show.

Mattie has gradually resumed his public activities. He recently served as co-chair of a conference on Intergenerational Caregiving: A Panel of Experts with Rosalynn Carter. He gave the opening speech and the former first lady gave the closing. Former President Jimmy Carter remains one of Mattie’s most important heroes and role models.

Mattie and Jeni continue to take things one day at a time. Mattie, of course, was a hugely important part of last year’s Jerry Lewis MDA Labor Day Telethon, and he has every intention of playing a similar role in 2003.

Please keep Mattie and his mom in your thoughts in the months ahead, and wish them luck in facing every challenge that comes their way.

With every best wish...

The Ross Report Archive