As soon as you meet him, it becomes apparent that Jonathan Coleman is no average youngster.
First of all, there's that huge, from-the-heart and ever-present grin that illuminates any room he's in like beacons light up airport runways.
And then there's his size. Jonathan is 12, almost 13, but he looks much younger.
And then there's his intelligence and wit, which make him seem about 12 or 13 times older than he is.
And then there's the cane he uses to walk. This stands out immediately 12-year-olds aren't supposed to need canes to walk.
Then there's his eyes. Jonathan's face is so animated that it takes a while to realize that his eyelids are closed most of the time. This is because he is nearly blind.
That's another one the ways muscular dystrophy ravages the human body.
The Roundup's first story about Jonathan ran almost one year ago. To recap this Payson boy's history, both he and his 32-year-old mother, Deborah, have forms of muscular dystrophy. Both are terminal. Both were diagnosed with their respective forms of MD in 1992. She was found to have Kearn's Sayre Syndrome, and three months later, Jonathan, who was then 4, was diagnosed with Pearson's Marrow Pancreas Syndrome, for which the symptoms include, but hardly end with, bone marrow failure, pancreas dysfunction and growth inhibition.
Two-thirds of children with Pearson's Syndrome don't outlive the disease, and all of its victims "advance" into Kearn's Sayre as Jonathon did in 1997.
To most people, it would be overwhelming.
But right now, at least, Jonathan and his mother don't have time to be overwhelmed. They are far too busy promoting the upcoming edition of Jerry Lewis' Muscular Dystrophy Association Telethon which last year turned Jonathan into a local celebrity when he was interviewed on a participating Valley television station.
This year, Jonathan's star will shine even brighter. He'll be back on the air come Labor Day. He's filmed a commercial in which he actually had to "act," and he's lined up for all sorts of personal appearances all to promote research into a disease that he's far more familiar with than any 12-year-old should be.
During a rare break in his schedule, Jonathan agreed to sit still long enough to endure one of the downsides of fame:
The hometown newspaper interview.
Q: So when is your next public appearance?
Jonathan: The Zane Grey Twirlers want me back. I'm going to sing for them, like I did last year. They're raising money for MDA. I'm going to sing The Backstreet Boys' "Larger Than Life," and Kevin Sharp's "Nobody Knows It But Me."
Q: And you're going to be on the telethon again. How did you like being on television last year?
Jonathan: Ohhhhh, it was special, but it was nothing super. And this year is not that thrilling. I've already done it.
Q: So why are you doing it again?
Jonathan: Because they asked me to. It's TV!
Q: Oh, I think you have a better reason than that.
Jonathan: Yeah, I do. I met two friends at summer camp this year. They're in mechanical wheelchairs. I want to make sure they get back to camp next summer, because I started hanging around with them so much that I started calling them my "bro's" and my "homeys." Their names are Chris and Mark.
Q: So you had fun at summer camp this year?
Jonathan: Oh, yeah. My soccer team got another first-place gold medal. The thing I like about soccer at my camp is that we play in the wheelchairs. It's a lot funner. You get to ram into everybody as they're trying to get the ball from you. There are kids with mechanical wheelchairs, and kids with regular wheelchairs. To make it fair, the kids in regular wheelchairs, like me, have counselors who push them. The first year I started camp, I won my team first-place gold medals in soccer and hockey. This year, I did it again. I outnumbered the defense.
Q: Tell me about the commercial you filmed for the MDA telethon.
Jonathan: I filmed it in the Valley, at the Channel 3 studio. It will be on the air probably next week.
Q: What did you do in the commercial? You co-starred with Channel 3's news anchors, right?
Jonathan: Yeah. When it starts, I say, "You know what? I'm pretty lucky." And Tara (Hitchcock) says, "Why is that, Jon?" And I say, "Because I get to spend the weekend with three of my favorite people." And Dan (Davis) goes, "Well, who's that?" And I go, "You guys." And Liz (Habib) goes, "I think we're the lucky ones." Then she taps my shoulder and all three of them say, "Labor Day weekend, watch News Channel 3" ... and I say, "The place with the MDA telethon."
I knew all my lines better than they did.
Q: How's your eyesight doing?
Jonathan: The way it seems to me, it don't look like it's changed. But my mom and my poppa can tell that it's changing, because I stepped on our baby kittens a couple of times, and I got the dukey clawed out of me.
Q: You got the WHAT clawed out of you?
Jonathan: The dukey.
Q: What's dukey?
Jonathan: Figure it out.
Q: Oh. I understand ...
Jonathan: Also, I had surgery in May. I had a pacemaker put in. It don't bother me. It kinda feels like you've got a second heart. That kinda freaks me out, having two hearts. But it makes me feel better except whenever I walk by the microwave and I get zapped. When it first happened, I would grab my chest like I was having a heart attack or something. I thought I was having a seizure. But my poppa was there, telling me, "It's OK, Jon."
The week before the surgery, I was always really tired. I've got a lot more energy now. The day after the surgery, I went back to school.
Oh, I forgot to tell you I have a girlfriend now. Her name is Dani. She's a big tomboy. She likes me, and I think I'm obsessed with her pretty much. I'm always saying, "Dani this and Dani that." I took her to see "The Mummy Returns."
Q: You could see the movie screen well enough?
Jonathan: Not exactly, but she told me what was going on. I just had a great time being with her. We were just cracking up.
Q: So do you think you're going to get married some day? Or are you going to wait to see if you meet any other girls?
Jonathan: No. I'm not a player. My mom taught me right. I'm not that type.