Boy With Muscular Dystrophy To Be Tv Spokesman

Mother, son both fighting fatal disease

Advertisement

In the most important respects, 11-year-old Jonathon Coleman of Payson is just like other children.

But there are a few things about this boy that make him different.

For example, when he talks about his recent week at summer camp, it's apparent that Jonathon is a high achiever.

"My counselor had never won a championship in hockey or soccer," he says. "But me and him won first place in hockey and first place in soccer. And I also won Most Spirited Camper, Best Team Spirit, and Best Male Performance for singing the Backstreet Boys' 'I Want it That Way.'"

And when Jonathon talks about school, he demonstrates an unusually level head for someone not old enough to remember Ronald Reagan.

"I love school, and there ain't nothing that's gonna stop me from getting an education," he says.

Because nothing is more important than education, right?

"No. Education is second important. First important is family."

Unfortunately, Jonathon has been forced to learn that lesson firsthand. And so has his mother, Deborah Coleman.

Both have forms of muscular dystrophy. Both are terminal. And both know how Jerry Lewis' Muscular Dystrophy Association Telethon, which makes its annual 21.5-hour return to television Sunday, can touch the life of an 11 -year-old boy.

The telethon, Deborah says, made it possible for Jonathon to attend the summer camp that he loved so much.

"I had never asked anything of MDA," says Deborah, 32. "But this year I called and asked that they send Jonathon to camp and they were right there with the paperwork. Two weeks later, he was at Camp Shadow Pines in Heber. They are really super people."

"At first I was scared," Jonathon remembers. "But then I realized that there ain't nothing to be afraid of. All the kids are equal to you. I made a lot of friends and then I was afraid to come home, because I didn't want to lose all my new friends.

"I didn't know very much about the telethon before," he says. "But now, to me, the telethon means sending kids to camp and letting them have a really great time."

Making medical history

Both Deborah and Jonathon were diagnosed with their respective forms of muscular dystrophy in 1992.

First, she was found to have Kearn's Sayre Syndrome, and three months later, Jonathon, who was then 4, was diagnosed with Pearson's Marrow Pancreas Syndrome, symptomized by bone marrow failure, pancreas dysfunction and growth inhibition, among other things.

"They had never in medical history seen a mother with Kearn's Sayre pass on Pearson's to her child," Deborah says.

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.

The first parts of his body that the disease began to ravage were his eyes.

"In May of 1997 his eyesight was 20-20," Deborah says. "By September it was 20-2,300 ... There's nothing that can be done about it. Eventually his vision will be completely gone. Right now he has about 2,800 vision in both eyes.

"Jonathon's using a cane now; he's learning Braille, he's learning keyboard. Fortunately, they have a lot of adaptive equipment at Rim Country Middle School. And he's adapting well."

Deborah's doctors have only been able to guess that she was born with her disease. Although the symptoms typically surface between the ages of 16 and 21, she was 24. It was only through her own research that she learned that her disease is a form of muscular dystrophy.

Surprisingly, the diagnosis brought Deborah some amount of relief.

"It kind of answered a lot of the questions I had. Why didn't I feel normal? Why had I been a little delayed in learning ever since I was a child? Why hadn't I been able to keep up with the other kids ... Why was I different?"

Asked if it was harder to learn of her own condition or Jonathon's, Deborah doesn't hesitate.

"Finding out that my son had it," she says flatly. "A lot of it was guilt feelings, even though I knew and know I had no control over it. And with him having Pearson's Syndrome, (his health will deteriorate) a lot more quickly than mine."

One other thing the Coleman's doctors haven't been able to explain is the seemingly perfect health of Deborah's 13-year-old daughter, Jessica.

"They think maybe it's because I was so young when I had her," Deborah says. "She could be a carrier of the disease, but so far she doesn't show any symptoms."

Jessica admits that the prospect of developing muscular dystrophy is "a little scary. But I'm not going to think about it until it happens."

Jerry's kid

Sunday, Jonathon's going to be one busy spokesman.

For one thing, MDA has chosen two Arizona children to go to Channel 3 in the Valley to appear on Sunday's telethon for a live interview and Jonathon is one of them.

"Andrea, the person I spoke to on the phone, said she met Jonathon at camp and thought he had an outgoing personality, and she liked the idea that he could get up in front of a group of people to sing."

Jonathan is scheduled to make his television debut at about 8:45 p.m.

Also on Sunday, Rim Country Middle School will hold its own telethon-related drive from noon until 8 p.m. Jonathon will make an appearance from 2 p.m. to 3 p.m., during which both he and his mother will make speeches, and Jonathon will sing his award-winning song.

"I'm also going to tell people about my disease and what a great time I had at camp this year," he says.

What will he say about his disease?

"Probably that no one wants to have it, but there ain't nothing I can do about it," he says with a smile.

"I can remember watching the telethon as a kid and never thinking I'd become one of 'Jerry's kids,'" says Deborah. "It's important not just for camp, but for the research with gene therapy, and for helping people to purchase whatever they need, because a lot of the insurance companies won't cover us.

"You don't want to look for handouts, but you need the help. And that's what the telethon does."

Commenting has been disabled for this item.