The Duneland Exchange Club recently presented Scott Radcliff with the 2010 A.C.E. Award.

A.C.E. stands for the Accepting the Challenge of Excellence and is given annually to one senior from Chesterton High School who has faced a challenging and difficult time in their life and has persevered and will graduate from high school. The Duneland Exchange Club gives this award to recognize students for incredible achievement.

Scott was born on July 18, 1991 with a rare congenital disorder known as Arthrogryposis Multiplex Congenita (AMC). AMC is a non-progressive disease that is characterized by multiple joint contractures, which means curved or hooked joints. The principal cause of AMC is believed to be restricted fetal movement. There is no treatment to reverse the condition of AMC. Physical therapy, occupational therapy and surgery are options and treatment plans are tailored for each individual.

When Scott’s mom Amanda was pregnant with Scott she lost her amniotic fluid five months into her pregnancy. Amniotic fluid is critical, because this allows the baby to move within the womb. Doctors didn’t discover that the amniotic fluid was gone until the eighth month and immediately performed an emergency C-section. Scott’s body was literally frozen. The doctors explained that it was as if Scott had been wrapped tightly in cellophane for three months.

At the time of Scott’s birth he had a broken hip. His leg was wrapped around his head. He had clubbed feet, his wrists, ankles, shoulders, elbows, legs, knees and back were all impacted. His internal organs and mental capacity however were not affected.

The doctor’s were very negative about Scott’s future and thought he would likely be a paraplegic. They believed he would never walk or feed himself. Scott’s parents were devastated and scared. This was their first child and they had no idea what the future held.

Scott remained in the hospital for three weeks and then Amanda and Chris received a call that changed all of their lives. Shriner Hospital in Chicago requested Scott be flown to their hospital where he immediately underwent surgery. The doctors at Shriner were very positive and gave them encouragement on Scott’s condition. It wouldn’t be an easy road, but through surgeries and physical therapy there was hope. Hope is what they needed.

Scott underwent 11 surgeries the first two years of his life and he remained in physical therapy through middle school. Currently, he continues to do physical therapy on his own.

Scott’s dad really pushed him in his therapy and believed his son would be able to walk. He got his wish when at age six Scott began to walk for the first time. Today, Scott is a teenager and he has defied the odds of being a paraplegic, though his journey has and continues to be very difficult.

Asked if there is anything he could not do because of his condition Scott said not really. His goal is to live a normal life. He loves sports and can do lots of sports including swimming, bowling, wrestling, riding a bike and riding a motorcycle, to name a few. But he can’t play two sports that he would love: basketball and football.

Scott is very thankful he can walk and has mobility. However, he still experiences joint stiffness and he doesn’t have full joint movement. Also, because his muscles and tendons were impacted, he hasn’t grown to the height he would have been.

But by far the hardest part for Scott is the pain in his back, legs, knees, ankles and feet. When asked where his pain level falls on a daily basis, on a scale of one to 10, with 10 being the most severe, he said without hesitation that it’s nine or 10 daily. He said that he is 18 years old, but feels as though he’s living in the body of an old person. Walking is becoming harder and harder because of pain.

People who have physical disabilities usually face social issues and Scott was asked about hard social issues he has faced. He says no matter where he goes people are always staring at him. Some people are even bolder; they will come up to him and ask “What’s wrong with you?” Also, he is like any teenage boy and he would like to date. He has asked several girls out and they all have said no. He later learns they have said no because of his physical disability.

Asked why he never turned to drugs or alcohol as a way to cope, he said he has seen the impact drugs and alcohol have on people’s lives and says that’s not for him. He is trying hard not to even take pain medicine. Sometimes he has no choice, but it rarely helps, so he says why bother.

Scott was asked how he remains so positive. He said he used to hope a miracle would happen in his life and everything would be okay. But then one day he realized that a miracle is just not going to happen. That was an important day, because he came to accept the condition and has been more determined than ever to cope with the disease and live as normal a life as possible.

He said there are people with all kinds of disabilities and he hopes people learn not to stare at them. People should get to know others for who they are. And last, he is a positive person, but people have no idea how challenging it is for him to get through each day.

“As a parent the hardest part of all of this is knowing the severe pain your child is in, knowing it’s getting worse and there’s nothing you can do to help,” Scott’s mom Amanda said. She says there are days when Scott is leaving for school and will tell her how hard it is to just walk out the door, because of pain. As a mom this breaks her heart. She said it’s also hard when your son comes home from school upset because kids made fun of him to his face due to his disability. “The sad part is some kids can be pretty cruel,” she said. She tells Scott not to let this define him and just brush it off. She wants to take the hurt away. “But you can’t.”

“Scott is such a great kid. He has a great personality. He makes you laugh. He is always there for you, and is a very loving and caring person,” Amanda added.

Chris, Scott’s dad, is extremely proud of his son. “He is such a solid kid and is so focused on his future and pursuing his dream, which he believes he will achieve.”

Michelle Pendleton, owner of Dairy Queen on Broadway hired Scott three years ago. “Scott is an incredible kid. I’ve been amazed by his determination, ” she said. He told Michelle from day one that he did not want to be treated differently. He was there to do a job. In the three years he’s worked for Michelle he has never called off of work and has never complained about being in pain. She knows he’s in pain and she is amazed how he continues and always has a smile on his face.

Scott has a bright future, but at the same time he has some difficult decisions to make, especially for an 18 year-old. As his pain is increasing he is looking for solutions. He has consulted with two specialists and their advice has been polar opposite of each other. One says the problem can be resolved by surgery and the other specialist says absolutely no to surgery, because it will not work and he would never walk again.

Scott isn’t sure what to do. He would love to see a top specialist in the country regarding his condition, but he can’t afford to. Also, Scott has worked hard to learn how to walk and have the freedom of walking unassisted, which is something he doesn’t want to lose. However, he needs to find a solution to ease the pain and he is doing research on braces, crutches, wheelchairs or other devices to reduce the pain.

Scott knows he faces a lot of tough decisions, which he is prepared to deal with, but at the same time he is excited about his future. He has a plan A and a plan B regarding his future career plans after high school. Plan A is going to college to become a conservation officer for the State of Indiana. He is passionate about this. He has researched what it would take to be a conservation officer and knows he can do it. There is one aspect of training that he physically will not be able to do, but he hopes the state will make an exception for him.

He is currently in vocational school for welding and he’s doing very well with this trade, so plan B is to continue this trade after high school.

No matter what plan Scott pursues he will be successful, because he has determination and commitment and he refuses to let this disability rule his life.

Posted 8/9/2010