by Tara Wood

Mattie Stepanek looks back on his first term as MDA National Goodwill Ambassador and eyes the future

Where does one begin when recapping 2002 in the life of Mattie Stepanek? With his nationwide television appearances on the 2001 and 2002 Jerry Lewis MDA Telethons? Good Morning America? The Oprah Winfrey Show? Larry King Live?

With his many book signings, where he signed autographs and his poetry books for thousands of adoring fans?

What about his opportunities to meet and befriend a terrific variety of celebrities like Oprah Winfrey, the stars of the Harry Potter films, former president Jimmy Carter or recording artist Christopher Cross?

Mattie, of course, has no trouble singling out the highlights of his first year serving as MDA’s National Goodwill Ambassador.

But even this amazing 12-year-old agrees that looking back at the past year is enough to make anyone’s head spin.

The Spotlight Is Still Shining

When Quest introduced its readers to this intelligent and charismatic Maryland boy a year ago, he’d just become a best-selling author and stepped into a national spotlight that still shines brightly on him today.

The national recognition and success came on the tail of his “miraculous” recovery from an acute illness that was a complication of mitochondrial myopathy, a rare neuromuscular disease that affects Mattie and his mother, Jeni.

Today, Mattie has published four highly successful volumes of his poetry, Heartsongs, Journey Through Heartsongs, Hope Through Heartsongs and Celebrate Through Heartsongs.

A fifth book, Loving Through Heartsongs, is due out this month, and a Heartsongs calendar and a “Treasury Gift Pack” can also be found in bookstores nationwide.

The young author — currently the nation’s best-selling poet — has received prestigious awards, been featured in major media and is often recognized in public.

“His prayer last year, when his health took a turn for the better, was to live every moment. Well, that prayer came true,” Jeni Stepanek said. “A lot of doors opened for him, and he took advantage and stepped through every door he could.”

That meant many speaking engagements, MDA events, lots of traveling and tons of fun.

Several MDA events figured high on his list.

“Aside from the Telethon, which was the big highlight, it’s a lot of fun going around to all of these different places,” Mattie said.

Ride for Life, a Harley-Davidson motorcycle event which took place in May in Eastern Pennsylvania and featured some 2,800 motorcycle enthusiasts, was “a whole lot of fun.”

MDA National Chairman Jery Lewis hams it up during the 2002 Telethon, much to Mattie's delight.

“The bikers are really some spirited, kind guys, and they’re really working and helping MDA. They and the fire fighters are two of our greatest heroes,” Mattie said of the event that raised over $700,000 for MDA programs.

He also was a key participant at national conferences of MDA sponsors CITGO and the International Association of Fire Fighters.

“It’s amazing to see all these people show up to do the right thing,” said Mattie, who also enjoyed a fun-packed week at his local MDA summer camp.

And then there was the icing on the cake: the Telethon.

Not only did he and his mother deliver several eloquent, heartfelt appeals, he enjoyed time on- and offstage with MDA National Chairman Jerry Lewis and other celebrities.

“Jerry Lewis, Ed McMahon, Wayne Brady, Jann Carl — they’re all such wonderful, devoted people. It was really cool,” Mattie said. “A lot of my friends are saying, ‘Oh my gosh, Wayne Brady dedicated a song to you!’ That was pretty neat.”

A Van Named Sophie and a Dog Named Micah

In addition to the thrill of being a central part of the Telethon broadcast, getting there was indeed half the fun for Mattie and Jeni.

The duo, accompanied by some good friends, made the trip from their home in a Washington suburb to Los Angeles in a spiffy new van that was a gift from a certain talk show host.

“Its name is Sophie,” Mattie said. “Sophie Oprah Stepanek.”

Not only did the gadget-filled, wheelchair-accessible van get them to the Telethon, it enabled them to make many shorter trips to book signings and speaking engagements across the country.

“We also knew how to have fun in that van,” Mattie said.

Mattie and Micah with their van, Sophie Oprah Stepanek

The cross-country trip took him through terrain he’d never before seen, including the Grand Canyon, Hoover Dam and the Petrified Forest in Arizona, and glittery Las Vegas. Mattie savored every new experience and the variety of terrain.

“There were times when we were way down looking up at things, and we were also way high up at times,” he said. “It’s just amazing, and we really need to set time apart to look at our beautiful country.”

Also riding along in the van was Micah, a new addition to the Stepanek family. The almost 1-year-old golden retriever is being trained as a service dog to assist Mattie and Jeni with daily living tasks.

Mattie said that Micah has quickly become part of the family, and has even tasted a bit of the limelight himself: He was at Mattie’s side — paws on the desk and all — when he was interviewed on “Larry King Live” on Labor Day weekend.

Micah has mastered tasks like pushing doors open or closed, and pushing a button to activate an automatic door. His next lesson is light switches. “He picks things up for us — whether we need them or not — and is a sense of love and security for me,” Mattie said.

Hitting the Road for Peace

In addition to speaking to thousands of people in behalf of MDA, Mattie gave motivational talks at other gatherings as part of his personal life mission as a peacemaker.

Oprah surprised Mattie with a chance to meet the stars of the "Harry Potter" movies, Emma Watston, Daniel Radcliffe and Rupert Grint.

For example, he was the keynote speaker at the Children’s Peace Pavilion for more than 5,000 students in Missouri, and for an audience of 2,000 at the Action Long Island Youth Conference in New York.

Whether his audience was a group of children, corporate salespeople, an association of dentists or a church group, his message is essentially the same.

“At the core is accepting who you are as a person, which allows you to then work within a family, a community and your world, and it leads to peace,” he said. “That’s the core message — whether it’s for MDA, for peace, for disability, for dentists, for motivation, spirituality, churches, synagogues. Start inside and build out.”

Ultra-Cool Kid Stuff

Oprah Winfrey was responsible for another highlight of Mattie’s year, one that was a great surprise for the youngster.

In October, Mattie was asked to come to Chicago for a taping of an Oprah show to update viewers about his health and activities.

When he got there, however, he found that instead, he was one of dozens of lucky school-age kids to get a sneak preview of the blockbuster movie “Harry Potter and the Chamber of Secrets.”

But that’s not all … the three young stars of the movie were surprise guests on the show, and afterward answered questions from the audience.

During the taping, Mattie not only found out that Daniel Radcliffe, who plays Harry Potter, knew who he was, but he also got to meet Emma Watston, his, well, very favorite young actress. “I’m still going nuts, saying ‘she touched my hand!’ When she whipped around, her hair accidentally went into my mouth for a second,” Mattie said. “I said to my mom, ‘I’m never washing this hand or brushing my teeth again.’ She said, ‘The hand we can work out, but the teeth, sorry, you’ve got to brush them.’”

Cast members gave Mattie a “Hogwarts acceptance letter” from the fictitious school that Harry Potter attends, and a wand that was an actual prop in the movie.

“That was really exciting,” Mattie said. “They’re all really nice kids.”

Still Finding Time to Play and Study

Speaking of kids, Mattie did enjoy being one during his whirlwind year.

He also stayed on track with his schoolwork despite an incredibly busy schedule. Since he’s

Everybody loves to meet Ray Romano, star of "Everybody Loves Raymond," and Mattie was no exception.

homeschooled by his mom, he was able to take much of his work on the road with him.

“Health comes first, but his education fits right into all of it. Being a kid ranks up there with health,” said Jeni, who, too, has kept up with her studies. She’s now one class and a dissertation away from earning her Ph.D. in early childhood special education, with a specialization in anticipatory grief.

Mattie’s health, overall, has been good, but the year did include some hospital stays. In November, he received one of several blood transfusions to boost the percentage of oxygen in his blood. That, in turn, dramatically increases his energy level. Doctors and nurses continue to keep a close eye on his health.

Despite the excitement of the year — which even included moving to a Baltimore suburb when a mold problem developed in their old home — the Stepaneks still found time to play and enjoy days at home, Jeni said.

“Yes, it has been a very, very busy year. But it was good. I don’t regret any of it. It was opportunity. I think it helped MDA. I think it helped us as individuals grow, and as a family, grow,” she said.

Mattie’s priorities are unchanged as he embarks on his second year as MDA National Goodwill Ambassador and continues to advocate for peace.

In fact, he’s already set one lofty goal, to the tune of $2 million.

Mattie and Jeni enjoyed the breathtaking view from the rim of the Grand Cayon in Arizona.

“I’m excited about my new term. I’m going to set a big goal for the Telethon, because I’m going to help Jerry beat last year’s [toteboard figure of $58.3 million] by a lot,” Mattie said. “It would be really neat if we got to $60 million or more. This year we jumped 2 million and there’s no reason we can’t do it again.”

Chances are that goal will be easily attained if any potential MDA supporters hear what Mattie Stepanek has to say about the Association.

“MDA is our torch, and they’re our bulldozer — they get all the obstacles out of the way for us.

“Everything in life is a choice, even if the only choice we have is the attitude with which we embrace each moment. So make the right choice and help MDA.”