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February 6, 2009

HIGH HOPES

In a fundraising marathon, parents of children with Duchenne Muscular Dystrophy are climbing Mount Rainier in hopes of getting one step closer to a cure

By Vanessa Fultz, Democrat Reporter

Bill Procko's climb to the top of Mount Rainier in Washington State ended just shy of the summit due to avalanche conditions. Seven years later, his unfinished business with that mountain has an even greater purpose.

Procko, whose five-year-old son Evan has a rare disease called Duchenne Muscular Dystrophy, is joining families around the nation who have been touched by the disease in a fundraising effort to help find a cure. The group is recruiting a team of 18 climbers to hike 14,410 feet to the top of Mount Rainier in August.

DMD is a rare form of Muscular Dystrophy, which only afflicts boys, and which is 100 percent fatal. Those diagnosed only live through their late teens or early twenties.

Since Evan was diagnosed with DMD about a year ago Procko and his wife, Kim, have been researching for answers and pouring funds into research efforts for a cure.

Evan, who started Pre-Kindergarten at Branford Elementary this year, loves music, art and cooking - anything that doesn't require much running and jumping, since the disease attacks the muscles. But he does like to toss around a ball.

"He has natural athletic talent," Evan's dad said.

Evan has been taking steroids since around Christmas. His dad said it strengthens his heart and muscles and slows the progression of the disease. However, Bill Procko said the steroids will stunt Evan's growth and cause weight gain and mood swings -- side effects which his parents hope to reduce through good nutrition.

Climbers participating in the fundraiser will have until Aug. 29 to raise $14,410 each - a dollar for every foot of the mountain's height - for a grand total of $259,380, all of which will go toward research for the cause of finding a cure for DMD. Donors may sponsor a climber for $1 per foot. Cure Duchenne Muscular Dystrophy, an organization founded by the parents of a DMD child, is hosting the event.

Procko said much of the money raised will go to a Dutch company working on a form of gene therapy. If successful, some patients might be granted a normal life span. If Evan is a candidate for the therapy, Bill Procko said he is confident his son will live to see a cure.

"It's a mountain we will climb, but we're saying to ourselves this isn't an impossible fight, this isn't an impossible climb," Procko said of the fundraiser.

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