Student finds empowerment in religion to continue life-long battle

Jamie Stober’s feet are always cold. They swell up from poor blood circulation as a result of constant sitting.

He can flip through the pages of his religious philosophy book, but he needs help putting on his jacket.

Stober, a 23-year-old MU student from Sedalia, has Duchenne muscular dystrophy, a degenerative disorder affecting one in every 35,000 males who inherit from their mothers a recessive X-chromosome with a mutated dystrophin gene. Dystrophin produces muscle proteins that enable the muscle to stay strong and develop. The absence of dystrophin weakens muscle cells, eventually causing them to die.

“I used to throw a football. I don’t have that anymore,” Stober said, “I don’t have those abilities that people take for granted.”

He used to be able to use his legs, but the muscles deteriorated. The most significant change of Stober’s life came when he was 12 and was put in a wheelchair.

“I thought I was all right with it at the time; it wasn’t a big deal,” he said, “but looking back, I withdrew from people and became isolated.”

Stober found his strength through his faith in God and Jesus Christ. It is this that led him to regard his disability as a blessing rather than a curse, since it allowed him to realize his need for God.

“I couldn’t imagine responding as well as I have to my disability without the strength I got from my faith,” Stober said.

Stober’s friend Patrick Martin recalled seeing Stober go to class in the rain one day despite being unable to carry an umbrella. This picture of Stober stands out for Martin, who admits that he is sometimes tempted to skip class because he’s tired.

As a senior, Stober is involved in Campus Crusade for Christ and is the leader of one of its prayer teams. He occasionally speaks to others about God’s role in people’s lives and the impact his faith has had on his own life.

“He (God) gives me a hope for the future, a purpose and assurance that he’s going to work things out for my benefit,” he said.

He recently switched from majoring in journalism to religious studies. The change is a reflection of his passion for religion.

People who know Stober said his interest in religious philosophy gives testimony to his intellect.

“He looked at encyclopedias even before he could read,” his mother, Rebecca Sleeper, said.

His sister, Emily, while proudly looking at her brother, said he is in the top 15 percent of his class.

Stober is a self-described typical Missouri hick who would listen to country music and fish all day if he could. Make that fish and watch sports — especially the Kansas City Chiefs.

He can be found at Starbucks drinking coffee with his friends, talking about politics, God and theology, or just joking around.

“He has a passion for everything he does,” his sister said.

“It’s so easy for him to resign himself from others, but he chooses to be active,” Martin added.

Stober has come to realize he could access life to the fullest despite his disability. Coming to college reflected this conviction.

His drive to make change in his community comes from his passion for politics and reform.

He feels compelled to write about social issues, particularly those affecting the disabled, such as Medicaid cuts. But his thoughts are never far from his faith.

“And this is the dream,” he said. “When I graduate, I want to go to seminary to become more knowledgeable about the Christian faith. I’m called to write, to teach, to speak, to defend the Christian faith. I think I have a story to tell.”

Duchenne Muscular Dystrophy eventually affects all voluntary muscles, as well as the heart and breathing muscles. Survival is rare beyond the early 30s. Death typically occurs from respiratory failure or heart disorders.

Stober has outlived three members of his family who suffered from the disorder. His mother credited this to his strong will.

“It’s such a struggle every day, but he’s such a strong person,” she said.