by Tara Wood

Hes revved up and ready.

Hes making up for lost time.

Hes determined to make a difference in the world.

Sound like a movie trailer for an upcoming thriller?

Actually, "he" is Mattie Stepanek, and this hype is about how the 13-year-old from Baltimore is eagerly taking on his third term as MDA National Goodwill Ambassador.

Although he may not be fighting aliens or evil bad guys like an action movie star, Matties three years of service as MDA National Goodwill Ambassador could be loosely compared to a hit Hollywood trilogy:

Mattie (the original): A smash hit that topped the charts.

Mattie II: Same outstanding lead character and great promise, but gets bogged down by timing problems.

Mattie III: Expectations are high for another blockbuster.

In fact, nobody has higher expectations than Mattie himself as he readies to represent MDA at a variety of local and national events this year.

Mattie is known worldwide for his best-selling "Heartsongs" poetry books and peacemaking efforts. Hes also making a name for his incredible history of fighting back from serious complications of his neuromuscular disease.

Mattie has mitochondrial myopathy, which causes muscle weakness and difficulty regulating body functions such as heart rate. His mother, Jeni, is affected by an adult-onset form of the disease, and Matties three older siblings died from it.

Ready for Another Round

	Mattie with his mom, Jeni Photos by Tracy Atlee

Mattie was ecstatic and uncharacteristically speechless when MDA officials asked him to serve a third term, a request that hasnt been made since the 1960s.

"When I first got the phone call, I didnt know what to say. It was one of the few, rare times that I quit talking. It was just such a shocking surprise," Mattie said.

Looking back at his second term in 2003, Mattie said hes most affected by the things he was forced to miss because of a four-month stay at Childrens Hospital in Washington.

"I was really disappointed, not about what I did do, but what I didnt do," he said.

From February to May, Mattie was treated for a bleeding airway, a situation that at times was very grave. The experience was similar to a downturn in 2001 that saw him on the brink of death.

Mattie then, too, made what doctors called a "miraculous" recovery, and soon afterwards he vaulted into the national spotlight as the nation was captivated by his poetry, wisdom, and message of peace and understanding.

This year, rotten timing of health complications forced him to miss some of his favorite MDA events, such as the Ride for Life, a huge gathering of East Coast Harley-Davidson enthusiasts that has raised millions for MDA.

Instead, he found himself "just sitting there bleeding and coughing every day, and the doctors saying, He might die," Mattie said.

After two weeks in the hospital, Mattie was released temporarily to attend the first annual Heartsongs Gala in Washington, an MDA benefit that honored Matties spirit and his life philosophy of "playing after every storm."

The February event coincided with the release of his fifth book, "Loving Through Heartsongs," and a massive snowstorm on the East Coast that snowed in many guests and friends who attended the gala.

Mattie said he and Jeni made the most of his time out of the hospital by ordering pizza, spending time with friends, and attempting a snowball fight with the "yucky" city snow.

The highly successful gala and the blizzard helped keep his mind off his pending return to the hospital and the seriousness of his situation.

"I was so nervous because I knew this could probably be either the last two days Id see the outside world for a really long time, or the last two days Id see the outside world ever," he said.

The Comeback Kid

But Mattie is Mattie, and he found his way out of the hospital in May, just in time to attend a weeklong MDA summer camp and celebrate his 13th birthday on July 17. He marked the milestone with a big crab feast hed been planning for years, he said.

	Mattie with Billy Gilman

The year also included an exciting collaboration with teenage recording artist Billy Gilman, now MDAs National Youth Chairperson. Gilmans album "Music Through Heartsongs: Songs Based on the Poems of Mattie J.T. Stepanek" was released in April.

Mattie also cites the 2003 Jerry Lewis MDA Telethon as a terrific highlight of the year.

Unable to travel to Los Angeles because of his fragile health, Mattie appeared on the national broadcast live via satellite from Baltimore. But by no means did he take it easy on Labor Day weekend.

He also co-emceed the local broadcast with Bruce Cunningham, a Baltimore sports anchor with Fox-45 News, for 21 hours straight, and helped set a new record for pledges raised.

At times the broadcast was very emotional for him, particularly when a segment honored a friend who had passed away during MDA summer camp.

Mattie told viewers, "This is what were fighting for is to prevent things like this from happening. No one who is going to camp, which is a week of heaven to celebrate life, and heaven on earth should go to the real heaven during that week."

Back to a Normal Life

Nowadays, the Stepaneks are grateful to have a "typical" week whenever they can. That means tending to Matties ongoing homeschooling by Jeni and Jenis graduate work at the University of Maryland.

A new medical protocol also occupies much of his time, as Mattie goes to the hospital weekly on an outpatient basis for transfusions of platelets and sometimes red blood cells.

Last year, doctors realized that the frequent transfusions were causing an iron overload in his blood, so he now undergoes regular treatments with Desferal (deferoxamine mesylate) to reduce the iron level and protect his liver. He has to watch for side effects from the drug, including low blood pressure.

Mattie at a November book signing at Borders in Rockville, Md.

Mattie speaks to fans and signs a copy of "Loving Through Heartsongs" for Tierra Maressy. Photos by Stuart Zolotorow

"It seems that every time we jump one hurdle, another one comes out of nowhere," said Mattie, who has a crystal-clear grasp of his health status, right down to reciting what his vital signs and the levels of iron, oxygen and other chemicals in his blood should be.

"Its very important that I know in case theres an emergency and Im the only one to answer questions," Mattie said, adding that he likes to be involved in his care. "I like to know whats going on, why its going on, and how it happens, how long it takes, things like that. In fact, once Im in tune, I like to help out."

Despite the ups and downs of his health struggle, Mattie continues to welcome and firmly embrace the events of everyday life.

More School, More Writing

Quest interviewed Mattie on a test day, with history and English emerging as his favorite school subjects. He also enjoys taking part in monthly events for the local MDA teen club, chess lessons, and giving lots of love to his service dog-in-training, Micah.

Matties fans will notice that his boyish grin is giving way to the mug of a maturing young man, and some faint but classic trademarks of a teenager can now be detected. Sprinkled lightly among his wise-beyond-his-years, philosophical conversation are words like "cool" and a laugh about how messy his room is.

"Im keeping up my spirits. In fact, the only thing thats going wrong right now is my room needs cleaning. Im looking at my bed and Im thinking oh my gosh."

Mattie with his service dog, Micah

But again, Mattie is Mattie, and that means hes undertaking a new schedule of book signings and public speaking engagements.

In October he was honored by the U.S. Department of Health & Human Services for his humanitarian endeavors.

Hes in the early stages of writing a book about peace, and plans for the second annual Heartsongs Gala (Feb. 21) are in full swing. Of course, there are always other projects and ideas brewing.

Aside from the difficult times, Mattie says of 2003 that he is "glad I got to do what I did, and Im going to keep doing."

Mattie and his team of supporters are taking extra precautions medically so that he can accomplish everything he hopes to this year.

Hes also deeply grateful for the massive outpouring of help and good wishes he receives.

"One of the biggest reasons I keep pulling through is prayer and friendship," Mattie said, adding that on some days during his hospitalization it was hard to remain positive.

"Some days I would be furious, and I would say, Im just going to give up. Come on, trachea, collapse. The next day, I would say, I must have looked and sounded so stupid. I cant believe I did that."

Now, Mattie emphasizes, whether hes telling MDA sponsors and supporters or telling himself, it has never, ever been more important to keep fighting.

"Its important not to give up, and thats what MDA is about," he said.