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Zachary Barnes honored with ACE Award

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The 13th annual Duneland Exchange Club A.C.E. Award, for Accepting the Challenge of Excellence, was presented to Chesterton High School senior Zachary Barnes, who has faced challenges and difficulty and persevered, graduating from high school.

The Duneland Exchange Club gives this award to recognize students for incredible achievement.

Zach was born in Florida in 1995 and his family moved to Chesterton when he was a third grader. His parents are Melissa and Craig Barnes. He has three siblings, Kyle and Jacob Barnes and step-brother Louie Razo.

Zach was born with Muscular Dystrophy, known as MD. There are different types of MD and the doctors are perplexed because they canít determine the exact type Zach has. Congenital Muscular Dystrophy is apparent at birth or becomes evident before age 2. Some forms progress slowly and cause only mild disability, while others progress rapidly and cause more severe impairment.

Zach was diagnosed with Muscular Dystrophy at age three when his parents realized Zach couldnít walk. Instead, he would slide or crawl and would even pull himself up stairs.

However, by age four the disease weakened Zach and he no longer had the strength to crawl and had use a wheelchair. Not only did the progression affect his muscles, it also weakened his bones.

In the summer of 2008 Zach fell off a small chair and broke the femur bones in both legs. His legs were not casted to preserve the flexibility of his knees. Zach said breaking his legs was the worst pain he has ever experienced. It took the entire summer for his legs to heal.

As Zach ages his muscles continue to weaken and he loses more flexibility. The good news is heís not in pain.

He loves to hang out with his friends, but he can't go to some of his friendsí houses because he can't get his wheelchair in.

Most of his life he has been withdrawn from people. Since he couldn't physically do things other kids could do he didn't think kids would be interested in interacting with him. This perception led him to be introverted.

During Zachís junior year he had an epiphany. He realized his perception of other kids was not accurate and he was robbing himself of friends. Plus, he knew the friends he did have treated him as an equal. As his attitude changed, he started being more open and showing others the real Zach. School became a new experience and he has grown his circle of friends.

MD has robbed Zach of playing his favorite sport, football. His favorite college team is Notre Dame. He attended the football games at school until his senior year. He didn't attend football games this past fall because he couldn't get to the senior section, half way up the bleachers, so he stayed home. He asks what fun is attending the game when you can't be in the same section as your friends.

Zach enjoys school and loves to learn. He is a math guy, but he also loves to write. He writes for the school newspaper, doing reviews of movies, games, and restaurants.

He is a big gamer and his dream is to create and program video games. He is a typical 18 year-old who loves to hang out and spend time with friends. He also hopes to drive one day and have his own car.

Zach is laid back and doesnít get stressed by life. He knows he canít change that he has MD. He knows he canít walk and he knows he never will be able to. Dwelling on the "why me" will not change that, which is why he doesnít waste his energy on it. Today, Zach is confident with who he is and heís not allowing MD to define him or his future.

Zach's mom Melissa has said the hardest part was knowing her son would never experience the freedom of walking. She describes her son as one of the strongest people she knows, and one of the most positive. She said he never views himself as having a disability and he has taught her to move forward. Her hope for Zach's future is that he will finish college, get a good job and experience independence.

When Zach moved here, Gabe Montemayor knew it would be hard for a new kid to make friends at school, so he quickly befriended Zach. Their friendship only grew and today Gabe is Zachís best friend. Gabe said Zach has never let his disability hold him back. He said Zach is brave, intelligent, always happy and has a way of boosting the spirits of those around him. He said when Zach canít attend a football game or go to an activity because of his disability he tells his friends to go without him, then makes sure they tell him all the details. Gabe said Zach is a shy person, but he is worth getting to know.

Zachís grandpa, Mike Burge, is in awe of Zach and says heís his hero. He said Zach is a mature young man and he respects how Zach takes ownership of his life and actions. He also said Zach has brought a love within him he never knew he had and that Zach has a deeper understanding of life than most people. Mike said his love for Zach is so great that heíd give his life if it would allow Zach to walk, experience playing football and the mobility that others enjoy daily.

This summer Zach and his grandpa Mike are heading west to visit the Grand Canyon, San Antonio, Texas and New Orleans.

He will start his freshman year at Ball State University in the fall, studying computer science. He dreams of moving to California to pursue his love of creating video games.

 

 

Posted 5/13/2014