<font color="#0033CC">FEATURE:</font> UPHILL BATTLE -- Bill Procko scales Mt. Rainier in an effort to save his son

By Stephenie Livingston, Reporter

As he made his way back down Mt. Rainier, the joy he felt at the summit abandoned him. The euphoria of finally reaching the top on his third try vanished, and he began to sob quietly behind his goggles. He was thinking of Evan's leg braces.

Reaching the top of Mt. Rainier filled Bill Procko with hope that one day researchers will find a cure for Duchenne muscular dystrophy, the rare disease that afflicts his son Evan and 25,000 other boys around the nation. However, reality set in as he began his descent. If a cure is not found, Evan, who just learned to hold his breath under water and dreams of skydiving when he's older, will be in a wheelchair by the time he's 12. By 15 he'll have to use a night ventilator because the muscles around his heart and respiratory system will have deteriorated. If he's lucky, he'll make it to his early 20's.

But what Bill thinks of the most is how his wife Kimberly tip-toes into Evan's room at night after he's asleep and quietly slips on leg braces meant to keep his tendons from tightening.

"Fifteen minutes in descent I started to lose it. I got really sad," said Bill only hours after returning to Branford from Seattle, Wash. "When you're up there it's such an explosive high. But coming back down, it's back to reality. I started thinking about Evan."

Bill's voice cracked and his light blue eyes, the same as Evans, filled with tears. "His braces. He just really doesn't want to wear them. He knows his older brother (Billy) doesn't have to wear them. We sneak in at night after he's asleep and put them on."

"He feels really self-conscious about his braces and when we have to stretch his legs," said Kimberly. "One night he said 'I wish I was Billy'. Billy heard, though, and he knew the perfect thing to say. He said, 'Well, Evan, I wish I was you. You won the game tonight in Candy Land'."

On the day of the summit, the climbers fought against the clock in the face of an approaching weather system. During the first 10,000 feet to base camp, the group of 12 encountered dangerous 60-degree ascents, falling pumice and deep crevasses.

"The climb to base camp felt like other whole mountains I have climbed," said Bill. Shortly after reaching Camp Muir, a violent avalanche of pumice covered the planned trail to the summit. "We heard the rumbling," said Bill. "Suddenly huge plumes of rocks and dust covered our pass." Half of the group was ready to quit. "I remember one of the climbers saying, 'Bill, I'm a father'," said Procko, who recounts the experience as one of the most difficult and frightening of his life. After a sleepless rest, the team set out around midnight on the second day to climb the 14,410-foot summit. Roped together in teams and by the light of headlamps, they braved the Cowlitz Glacier above Camp Muir.

On the traverse of the Cowlitz Glacier, which leads to Cathedral Rock (which accesses Ingraham Glacier), the winds suddenly picked up. Bill, wearing a picture of Evan around his neck, and the other climbers were hit with gusts of wind mixed with ice and pumice, which one climber said had them "reeling like drunken sailors."

The cold was considerable as well. Bill says at one point he pulled out a Snickers for a snack. "It was frozen so solid I couldn't even hammer it into pieces," he said. At that point, most of the six who would eventually turn back, already had. They turned back before reaching what Bill calls "The Jumping Board."

"One crevasse was what I called 'The Jumping Board'," Bill laughed. "It was a wide, deep crevasse. I was the last man on my team to have to jump it. I sort of just close my eyes and went for it. It was so dark I couldn't see anyway."

Six of the 12 reached the summit at sunrise, including Bill. But with the winds ever increasing, the victory was short lived. "The weather was going downhill only 10 minutes after summit," said Bill. The team had to quickly scramble to take group photographs. Bill also paused to take a picture with his banners for both Evan and Billy. "It was really amazing," Bill said of reaching the summit. "It was my third try and of all the important times, this was it."

After the 9,000-foot descent, responses ranged from "brutal" to "that was awesome." And Bill was sure to fulfill Evan's only request.

"Evan's one request for the entire climb was that I pee in the snow for him," said Bill.

"I was really worried about him," Kimberly said while sitting next to Bill in their Branford gym only hours after Bill returned home. "He had this really strong desire to make it. He wanted to make a point for people to understand what's going on with our son. I knew it was dangerous. There was a point where I just wanted him to come back home. I said 'I need you. I can't do this on my own'."

"There was an entire team lost on Mount Rainier in 1980. Nothing's predictable on that mountain," said Bill.

"His first words to me were 'Well, I'm still alive," laughed Kimberly.

Before the climb, Bill committed to raising $14,000 for Duchenne's research. He had gotten close to his goal before the climb. "There were a lot of no's," said Bill of his fundraising efforts for Duchenne's. "Sometimes there was just silence. But in the end, people came through. It was so poetic. While on the mountain I found out someone had donated and my goal was reached."

Altogether, the climb raised $120,000 for Duchenne's research.

"People should know 10 dollars, 20 dollars. To me it's like ten votes, twenty votes that my son may live," said Kimberly.

The Prockos say Evan is completely unaware of what may await him.

"He seems relatively normal now, but everyday he continues to get weaker," said Kimberly. "His disease is 100 percent fatal. That's a certainty unless there's a cure. It's the slow wasting away of a beautiful boy. It's a death sentence."

However, Kimberly says their goal is to leave people who hear their story with hope.

"What we want people to see is that there's hope for a cure," she said. "Whether we're speaking out or climbing mountains. We do it so people will jump on our bandwagon of hope." When hope is lost, people become inactive, said Bill. And Duchenne research looks promising with a successful trial of a new treatment announced in the Netherlands the day Bill returned to Branford by a company sponsored by Cure Duchenne's. The Prockos say a lack of funding is the only reason a cure has not already been found.

Until that cure is found, the Prockos cherish every funny moment, each family vacation, all of Evan's milestones, because they know it may be the last, or one of the few times it will happen quite that way.

"Right now I can carry him on my back up a mountain, but what about next year? What about when he's too big for me to carry?" said Bill.

"We won't go without him," said Kimberly. "In a really surreal way, everything we do together is more important. There's no guarantee that we're going to be able to do that again."

"It's like a powerful wave you can't hold back," said Bill.

Still, Bill and Kimberly stand strong against the wave. They lean on each other. When one is about to break from the pressure, the other is there for support. However, the tears in their eyes are constant reminders of the stress they are under, despite their optimism. "We were more happy," Kimberly said of her and Bill before Evan's diagnosis. "We've been very sad."

"Seventy-five percent of our time is spent coming up with ways to save Evan's life. Twenty-five percent of our time is spent coming up with ways to save our sanity," said Bill.

What bothers Bill the most, is worrying that Evan might one day have to know of his fatal disease. At night, Bill lies in bed with Evan until he falls asleep and watches him gaze at the glow-in-the-dark planets on his ceiling in pure wonderment.

"He falls asleep thinking everything is wonderful with everything ahead of him," said Bill. "And I'm just lying there with a sick stomach."

"You have this secret in your head as you smile and laugh and play with him that he doesn't know," said Bill. "What keeps us going is that maybe he'll never have to know."

"I'm gonna climb Mount Rainier when I get old," Evan said on the way home from school the day Bill reached the summit.

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