Steve Mellon, Post-Gazette photos The freedom Ryan Ballou has achieved with his specially equipped van has resulted in a new set of problems for the Edinboro University freshman.

By Gretchen McKay
Pittsburgh Post-Gazette

Video: A learning experience for Ryan Ballou -- This presentation documents the academic and physical check-ups for freshman Ryan Ballou after his first semester at Edinboro University. Click photo for larger image. Related content Story: Freshman with muscular dystrophy adjusts to college life Slideshow: Freedom for Ryan Story: First day in the dorm is tough for any freshman, including Ryan Ballou Slideshow: Ryan's Milestone

In the end, the biggest challenge facing Ryan Ballou during the first months of his freshman year at Edinboro University has not been the disease that has left him in a wheelchair and dependent on aides at the dorm to do ordinary tasks.

And it hasn't been his ability to make new friends, despite his fear that his disability would make him an outcast.

No, it's been the same challenge that faces any typical freshman away from home for the first time: how to handle that newfound freedom.

With no one breathing down his neck to stay on top of his homework or to get to class on time, he didn't work nearly as hard as he should have. Consequently, he struggled -- mightily -- with his course load.

The 19-year-old business major fell so far behind in accounting that he had no realistic hope of catching up. He failed to meet with his professor or get a tutor -- despite telling his father he would.

Little surprise, then, that when grades were posted in December he failed two of his five courses.

Compounding that, he managed to blow through all the money he earned over the summer while working at a community swimming pool. Having his customized van at school helped ease any homesickness by allowing him to travel home the first few weekends. But it also made it easy for Ryan and his buddies to do just about anything they wanted, whenever they wanted -- everything from shopping at Wal-Mart and forgoing the cafeteria for Burger King to going to the movies once or twice a week a half-hour away in Erie.

"I'm not very proud of my performance in my first semester," he admitted just after New Year's, as he contemplated the start of the spring semester on Jan. 16. "I didn't apply myself very well to the task at hand, and I kind of blew off the work."

Ryan Ballou watches as he's hooked up for an EKG at Ohio State University Medical Center in Columbus, Ohio. Ryan was diagnosed at age 5 with Duchenne muscular dystrophy, a terminal genetic disorder characterized by a progressive loss of muscle function. Click photo for larger image.

He paused, obviously embarrassed.

"I have a lot of friends up there, but I don't have a lot of good grades."

Freshman fears

Ryan, who grew up in Ben Avon and attended Avonworth High School, is hardly the first college freshman to test the waters. Nor is he the first to discover that too much freedom and not enough time management can make for some bad decisions.

These were the least of his worries when he started school at Edinboro in the fall. Ryan was born with Duchenne muscular dystrophy, a terminal genetic disorder characterized by a progressive loss of muscle function. Although he has the most severe of the nine forms of the disease, he's fared better than most because he has been on a treatment that has slowed the muscle deterioration.

So when it came time to select a college, he chose Edinboro, which is nationally renowned for its accessibility to disabled students. The teen, who has used a wheelchair for the past 1¹/₂ years, needs help getting in and out of bed, dressing and using the bathroom. Seeing that his father, Ty, wasn't going to college with him, that meant he'd have to rely on the school's cadre of personal-care assistants -- a major concern for him. But the situation has worked out well.

	Ryan fills out a form and chats with his dad, Ty, between medical tests. Click photo for larger image.

Looming nearly as large was the question of whether he'd make friends. As the only kid in a wheelchair at high school, Ryan was all too familiar with the isolating effects of a visible physical handicap; to the MTV generation, one's packaging very often is more important than one's content. He couldn't help but worry, what if socially it was more of the same?

"In high school, I didn't know if people were talking to me because they liked me and I was their friend or just because I was in a wheelchair and they possibly felt bad for me," he explained during the semester break, as he hung out in the living room of his dad's house in Ben Avon. "Or if they talked to the kid in the wheelchair, it might make them look better in front of their friends or girlfriends."

With one full semester of college firmly under his belt, those fears now seem kind of silly compared with the grade problem.

His father never expected straight A's. But he did expect his son -- who earned decent grades in high school and plans on following in his dad's footsteps in the marketing business -- to try his best.

"He knows from dear old dad that I set a bar for everyone giving a solid effort," Mr. Ballou notes, his voice edged with frustration. "I'm thinking he could have had a stronger effort."

He was so disheartened by his son's grades that initially, he wasn't sure he was going to send Ryan back to school. It was only after several "heartfelt conversations" in which his son vowed to do better that he agreed to let him finish the year.

Not that he isn't happy that Ryan made so many friends in such a short time or that he's been accepted by the college community as an equal. In that regard, Mr. Ballou says, Edinboro is everything he hoped it would be. But it's got to be about the grades, too.

"He's a bright man, and I want him to succeed in life," he says. "I explained, you get out of life what you put in."

What's bound to help Ryan make good on his promise is the temporary loss of his van -- one of his major distractions. Somehow on the drive home for Christmas break, Ryan managed to break the motorized lift that enables him to get his power wheelchair into the vehicle. The van is in a shop somewhere in the middle of Pennsylvania getting fixed.

Even if he gets the van back, Ryan promises he'll use it only on occasion.

"I'm still going to be social, but I'm also going to try my hardest to focus more on my classes," he says.

Time for checkup

Without his van to get around, Ryan was pretty much housebound during the entire semester break. That left time to squeeze in an appointment with Dr. Henry Wessel, the pediatric neurologist who's been seeing him since he was diagnosed with Duchenne at age 5.

Other than sore legs and tired muscles, Ryan's in much better shape than most kids his age with the disease, thanks to a drug called Calcort. But he's not without medical issues; the progressive deterioration of his muscles will eventually lead to heart and breathing problems. So Dr. Wessel suggested he also see a specialist four hours away at Ohio State University Medical Center.

That visit at the Ross Heart Hospital with Dr. Stephen Cook, an assistant professor of clinical internal medicine at OSU, took most of the day on Jan. 9.

First up was an echocardiogram, during which a sonographer attached electrodes to Ryan's chest and took pictures of his heart's valves and chambers to see how well it was functioning. Then it was on to his first heart MRI to determine if he had any scarring of the heart muscle.

During this noninvasive procedure, which uses powerful magnets and radio waves to construct pictures of the heart, Ryan had to lie on a narrow table that was slid into a large tunnel-like tube within a giant scanner. Special coils taped on his body sent and received the radio wave pulses, while an IV filled with a contrast agent made sure certain parts of the heart and blood vessels appeared brighter on the pictures. The test, during which the technician repeatedly asked Ryan to take in a breath and then "hold it," lasted about an hour.

By the time it was over, Ryan was visibly exhausted. But the results, as Dr. Cook relayed them a short time later, made it well worth it.

As a result of improvements in respiratory care, cardiovascular causes of death -- such as arrhythmias and cardiomyopathy, a condition in which the chambers of the heart enlarge and cannot pump adequately -- are on the rise in Duchenne patients. Yet the echo indicated a heart pump function of 60 percent or well within the "normal" range. So Ryan wouldn't have to start taking the beta-blocker Coreg, a medicine that slows the heart and allows it to work less hard.

The MRI, however, revealed some minor scarring. That means he'll have to start taking Aldactone, a drug that not only prevents more scarring but also can reverse it.

Dr. Cook, who also urged Ryan to stop smoking, got the young man and his father to agree to participate in a two-year study with five other Duchenne boys that will attempt to show the benefits of using a heart MRI to track the progression of the disease.

Buoyed by his doctor's good news and tired of spending his days doing "nothing," Ryan couldn't wait to get back to school and prove to his father that he can do better. Much better. But he admitted to being nervous.

Along with another try at algebra, his course load this time around includes microeconomics, more English, a psychology class, and wellness and weight-training.

"I'm not sure how that will go," he deadpans.

He's still going to hang out with his friends and have fun. But he'll also do a lot more homework and stay focused. And really, Dad, he'll even get a tutor if he starts falling behind again.

"Everything I need to do to succeed, I'll do," he says simply. "It's either do good, or I don't go back next year."