Evan Procko, 7, got to be chef for a day at the Gathering Restaurant in Branford Saturday, Sept. 17. Procko was diagnosed with a rare muscle disorder called Duchenne Muscular Dystrophy in 2008. Procko said he wants to grow up to be a cook. See the story, Page 11A.

On a regular day, one could visit a kindergarten classroom and hear the noisy conversations of children discussing their future and what they want to be when they grow up.

Evan Procko, 7,  told his kindergarten teacher last year that he wanted to be a chef when he grew up.

“He drew a picture of himself in a chef hat,” his mother Kimberly Procko said. “He calls it a cook right now. He said he wants to grow up to be a cook.”

Evan was able to experience his dream early by being chef for a day at The Gathering restaurant in Branford on Saturday, Sept. 17. What makes that so special is the fact that Evan was diagnosed with a rare muscle disorder called Duchenne Muscular Dystrophy (DMD) on March 23, 2008. There is currently no cure for DMD. Life expectancy for boys with DMD is late teens to early 20s. The loss of muscle mass starts in the legs and works its way up through the body.

“The thing that’s difficult with Duchenne’s is that it’s progressive,” Kimberly said. “We are really hoping to make his dreams come true by finding new research.”

Although Evan has a fatal disease, there is no stopping him. He laughs and rough houses with his older brother Billy, 10, and has his dad help him roll around on a skate board in their backyard. His curiosity in the kitchen is what got him a special guest appearance in the kitchen at The Gathering restaurant.

“He was very experimental with his food,” his mom said. “He wants to make stuff up like spinach, lime juice and honey, then he asks me ‘how would that be?’”

When he was four, Kimberly found him in the kitchen making a sandwich, “he was just having a blast making a sandwich.”

Evan helped manager Kyle Sabourin in the kitchen. The two made Alfredo sauce and grilled a hamburger. He made french fries and a “Procko Cookie,” which is a chocolate chip cookie sandwich with hot fudge, marshmallow cream and a mini peanut butter cup, with owner Beverly Sabourin.

“He just wanted to do it,” Beverly said of Evan’s insistence to make a dessert for his brother. “He didn’t care that it was sticky.”

Evan also shared with Beverly that he doesn’t like chocolate.

He served the food to his family and a family friend. Billy grinned from ear-to-ear when his brother dropped off his special dessert.

“It was awesome,” Billy gushed. “I love the fudge.”

Even after lunch was served it was difficult to get Evan out of the kitchen. He helped with the dishes and learned about the meat grinder and meat slicer. He even ventured into the walk-in freezer for the rest of the tour. The other highlight of the tour was the drive-thru.

“He loves the drive-thru. He is always asking about it,” his father Bill Procko said.

Evan was so excited about his chance to cook in the kitchen at the restaurant his dad said.

“He was just glowing,” Bill said. “He just loves it–anything and everything that has to do with cooking.”

His dad laughed, “He had to take his left over Alfredo to school for lunch. He was just so excited.”

Evan was accepted into a DMD gene therapy trial in August that will continue weekly through Feb. 2012. He and his dad fly to Columbus, Ohio every Tuesday for his treatment and then make the return trip home on Wednesday. His trial is through AVI Pharmaceuticals and it is an exon skipping trial.  

According to Quest, an online MDA research and health magazine, “Exon skipping for Duchenne MD is a strategy that uses chemicals called antisense oligonucleotides to cause cells to ‘skip’ flawed sections of genetic instructions for making the muscle protein dystrophin, thereby allowing synthesis of a functional protein.”  

The Procko’s hope is to bring awareness to DMD to find a cure.

“No parent should know when or how their child will die. We will not stare into his blue eyes and accept this as his future. From this point forward, every second of every day will be committed to stopping this monster from taking his body,” his parents wrote on their website SaveOurSon.org.

The family urges people to visit their website and visit CureDuchenne.org “to read all you can about DMD and the progress that is being made so that you can tell others. We are counting on you.”

Chef Procko filled a dream to the delight of his parents.

“It was not only good for Evan, it was good mentally for me and Bill,” Kimberly said.