Published: May 14, 2008 05:33 pm            

SAVING EVAN

Bill and Kim Procko's 4-year-old son has a rare

The little boy's calves were remarkably well developed, considering how much trouble he had climbing stairs. Or running. Or jumping. Or even walking more than a few steps at a time.

Evan Procko wasn't yet three, and his parents wondered whether he was just slow in his development. They kept comparing him to his big brother, Billy, but maybe that was a mistake. Maybe Billy had just been advanced at Evan's age.

Still, Evan's mother kept coming back to those calves. It was months before she realized why her son's stout-looking legs seemed oddly familiar.

A year ago last Christmas, Kim Procko, a kindergarten teacher at Branford Elementary, suddenly remembered a student she'd taught years before at another school. He had big calves too. But a physical therapist had told her the child's legs weren't very strong at all. He was suffering from a rare form of muscular dystrophy, and the size of his calves was due mostly to fat and scar tissue, not muscle. Now Kim remembered the boy's other symptoms too. He was physically weak and easily winded. Just like Evan. And he was unlikely to live past his late teens. The other boy suffered from Duchenne Muscular Dystrophy, a strain of MD which only afflicts boys, and which is 100 percent fatal.

Bill Procko, Evan's father, knew the truth the instant he heard it.

"I went downstairs and grabbed onto his calves and broke down," he said. "A parent knows."

A preliminary call to the Muscular Dystrophy Association followed that instant of recognition. Evan's formal diagnosis wouldn't come for more than a year, however.

"You'd think the first thing you'd do is get his diagnosis," said Bill, "but it's such a hard thing. We stayed in denial for months. Once you're diagnosed, there's no hope. We wanted to hang on to some hope."

"We just wanted it to be anything but (Duchenne MD)," said Kim.

Both of them knew what lay ahead, but neither was ready to face it.

It wasn't as if the Prockos hid their heads in the sand. They took Evan to a pediatrician who told them they had nothing to worry about. And just to be safe, they began giving him supplements which, according to Duchenne support groups, were said to be of some help.

It was in March, after a visit to Nemours Children's Hospital in Jacksonville, that Evan was formally diagnosed as suffering from Duchenne MD.

"We'd been practically convinced (of it)," said Kim, who, with Bill, had been carefully researching the disease. "But it was like hearing it for the first time."



* * *



Evan, now 4, has the heart of a daredevil. A little while back he saw a motorcyclist doing flips on television.

"Oh, cool, I'd like to do that," he told his mother.

"It breaks our hearts," says Kim. "Someday he probably could do those things. He's not afraid of much."

Evan doesn't know he's sick, and the Prockos want to be the ones who tell him - when the time is right. Meanwhile, he's certain he needs only practice to become as proficient at running and jumping as Billy, who's 6.

"'I can do this,'" Kim says he tells her when preparing for a footrace against his brother. "'I'm not going to fall.'" More often than not, he does.

Healthy muscles come back stronger after exercise. Not so for Evan. Every time he dusts himself off and tries again, his body only gets weaker. By the time he's 12 he'll probably be in a wheelchair.

That puts his parents in a difficult spot. How do you discourage a boy from running and playing - all the things that come naturally?

Recently Bill and Kim bought their son a small trampoline. Now he can romp with less physical effort.

"I can jump now," Kim says he told her recently, following what she called "a really grand attempt."

Billy hasn't been told just how serious the problem is. He knows his brother is sick, though.

"We've told him Evan's muscles aren't strong," says Kim, "but that the doctors are working on something to make him stronger."



* * *



They're trying. Duchenne MD is rare - only 1 in 3,500 boys (it doesn't afflict girls) is diagnosed with the disorder. It's only now starting to get the attention it deserves.

Some promising therapies are in the works, including one that involves gene-splicing. But still there's a long way to go, and the clock is running.

"Every day his muscles are dying," says Kim.

Their only hope is in research. And in folks who are willing to help pay for it.

For more information on what they're up against, go to www.cureduchenne.org. For more on Evan's story, go to saveourson.org.

        

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