Steve Mellon, Post-Gazette photos Ryan Ballou, 19, who was diagnosed at age 5 with Duchenne muscular dystrophy, a terminal genetic disorder, heads to his dormitory at Edinboro University.

By Gretchen McKay
Pittsburgh Post-Gazette EDINBORO, Pa. -- Ordinarily, Ryan Ballou handles the uncertainties that accompany change with a good-natured aplomb that defies his young age and acute medical condition.

Diagnosed at age 5 with Duchenne muscular dystrophy, a terminal genetic disorder characterized by a progressive loss of muscle function, the 19-year-old has spent most of his life learning how to compensate for and adapt to his physical limitations. As a result, he's pretty good at rolling with the punches.

	For a multimedia presentation on Ryan Ballou's first day at Edinboro, click on the image above.

When he slipped in the bathroom and broke his ankle a little more than a year ago, for example, and his physical therapists gently informed him he would never again have the strength to walk, he felt sad for a day or two -- and then moved on.

"I knew it was a reality at some point," he says with a slight shrug. Besides, he's quick to add, most boys with Duchenne muscular dystrophy are in wheelchairs by age 12, and he didn't make that tough transition until his junior year at Avonworth High School. A drug called Calcort has helped slow his muscle deterioration. So, yeah, even though the news was upsetting, "I just went with it."

Yet on this particular sun-drenched Saturday in late August, during an annual fall phenomenon at Edinboro University known as freshman move-in day, his apprehension is palpable. The nonchalant, let's-get-this-show-on-the-road aura he radiated when he pulled out of his Ben Avon driveway some two hours earlier has evaporated; as Ryan unlocks his electric wheelchair from the driver's seat of his customized van and rolls the chair onto a crowded parking lot outside Scranton Hall, his normally sunny face clouds up.

Part of it's the confusion. All about him, students are scurrying between the dorm and their cars with all the essentials in tow: pillows, iPods, footlockers, plastic milk boxes filled with papers and books, nervous parents, bored brothers and sisters. A few minutes after pulling in behind him, in fact, Ryan's own entourage -- which includes his divorced parents, three siblings and his oldest sister's boyfriend -- is busy unloading boxes and bags onto the sidewalk.

A minor panic sets in when his father, Ty, discovers that someone forgot to pack proof of his meningitis vaccination, which is required for him to live in the dorm. (It turns up few minutes later in a manila folder.)

It is also the day itself. Like most students on their way to college, Ryan spent much of the summer obsessing about what lay ahead. While he has no second thoughts about his choice of school -- Edinboro is ranked among the nation's top 10 universities for its services for students with disabilities -- there were still plenty of doubts. As he burned up the 100 or so miles of highway that morning, he says, the same "what ifs" that plague all college freshmen played over and over in his head:

What if I hate my dorm?

What if I can't handle the workload?

What if I can't make friends?

No wonder he's feeling just a tad edgy.

Yet only one unknown really seems to matter once Ryan rolls into his nondescript single on the first floor of Scranton Hall. But it's a biggie.

On move-in day Aug. 26, Ryan negotiates a crowded hallway of his dorm. Click photo for larger image.

What if the attendant care isn't any good?

Most college students think nothing of the routine, intimate chores of daily life -- things such as taking a shower, using the toilet or pulling on a pair of socks. But for Ryan and most of the 40 other young men and women on his floor in wheelchairs, even something as seemingly simple as getting out of bed in the morning takes help and planning.

Edinboro is more committed than most colleges to making life as easy as possible for disabled students: A small army of personal assistants staff the first floor of Scranton Hall 24 hours a day, seven days a week (there's a call button above the bed), and the school's Office for Students with Disabilities will also modify individual dorm rooms to each student's particular needs and wants.

Yet as resident assistant Tyler Smith -- whom Ryan knows from Muscular Dystrophy Association camp -- explains when he wheels into the freshman's room a little later, it's not seamless. You have to sign up the night before if you need help getting from bed to wheelchair or want to take a shower.

At home, Ryan confides, his father or older sister, Merett, assisted with these most personal activities. But at school, those helping hands will belong to perfect strangers.

"I'm kind of nervous of a random person helping me instead of my dad," he says.

So all that other stuff his more able-bodied classmates are stressing over? Until he gets the attendant routine down cold and adjusts to his new schedule, that will have to wait. But, he hopes, not too long.

"I'm scared, but excited to get out there."

A major milestone

College is an expected next step for many high school graduates. But for someone with Duchenne muscular dystrophy, it's very often just a dream. The most common of the nine forms of the disease, Duchenne is also the most severe; those afflicted (one out of every 3,500 boys) gradually lose their ability to walk, sit upright, move their arms and hands and breathe without the help of a ventilator. Survival is rare beyond the early 30s.

Thus the magnitude of this milestone isn't lost on his parents, who do their best to keep the mood upbeat by focusing not on their son, who looks slightly overwhelmed, but on getting his dorm room organized. Mom puts a fan in the window and makes his bed while Dad searches for an outlet to plug in a wheelchair charger; Merett, a 22-year-old sports marketing student at Robert Morris University, and her boyfriend Rob Southall, 24, an exercise physiology student at West Liberty State College in Wheeling, unpack lamps, hang clothes in the closet and set up the TV and alarm clock. Younger siblings Ryder, 9, and Ally, 4, Mr. Ballou's children with second wife Cathy, gather trash into a giant plastic bag.

Despite a veneer of joviality, however, the emotions of the day can't help but catch up with the family. Tempers occasionally flare in these tight quarters, as parents and siblings get in each other's way, and tears -- the good kind, borne of happiness and pride -- come and go.

That doesn't stop his mother, Peg, with whom Ryan has only recently begun to build a good relationship, from taking a moment to reflect.

"For him to be 19 and going off, it's like Humpf! Humpf! He beat all the odds," she declares. "I think attitude is your biggest disability and he's got a great attitude."

With his student ID tucked in his hat, Ryan moves onto campus to begin his term at Edinboro. Click photo for larger image.

Just how great is revealed a little later in the afternoon, after Ryan has picked up his student I.D. and printed out another application for a parking pass at the bursar's office. (Unlike his meningitis record, that document actually was left at home.) No doubt about it, it's going to be tough letting everyone go.

But Ryan has never been afraid to put himself out there, even though people sometimes made fun of his funny gait or, even worse, patted him on the head and called him "buddy." He played baseball until age 12 even though he couldn't run and never once got on base; shot pool with friends at Chalky's in Ross; learned to drive; got a job at a local swimming pool; and even dated (his classmates at Avonworth voted him Prom King his senior year).

"I know it's rare for kids with MD to live past 20, but you can't dwell on that," he says. "If I don't want this disease to win, I have to fight it."

Attending a college where disabled students are an accepted part of the landscape, he says, will give him the opportunity to do just that. At Avonworth, he was alone traveling the halls in a wheelchair. But at Edinboro, he's just another student.

"It feels nice that I won't be the center of attention."

That positive attitude is one that comforts his father.

"I always tell him, don't waste a day of your life or dwell on your condition or you'll die from the inside," says Mr. Ballou, president of Robinson-based Public Label Brands and PLB Sports. "And he doesn't. Ryan lives for today and tomorrow. He doesn't worry about the next day."

His parents, on the other hand, have been worrying about Ryan since he was a toddler, when they noticed something wasn't quite right about his development. Slow to crawl and walk, Ryan also had flat feet. But as Mr. Ballou recalls with just a hint of a smile, "We just thought he was slow and had flat feet."

It wasn't until the youngster was being refitted for a pair of orthotics at Children's Hospital of Pittsburgh that a doctor suggested they might want to see a specialist, referring them to Dr. Henry Wessel, a pediatric neurologist. It took just a few simple tests -- having Ryan run down the hallway and climb some stairs -- for Dr. Wessel to ascertain the child had some form of muscular dystrophy.

"[Dr. Wessel] told us he was going to run on his tippy-toes and climb the stairs on his hands and toes, and sure enough, he did."

A muscle biopsy revealed an absence of dystrophin, a protein that helps muscles keep their shape and length, and confirmed the diagnosis of Duchenne muscular dystrophy -- along with the excruciating news that their son probably wouldn't live to be 13.

Ryan, of course, was oblivious; Mr. Ballou remembers walking out of the hospital under a cloud of despair, while his son just wanted lunch.

"A million things go through your mind," he says. "How can this be? What does it mean? When do we tell him?"

With full use of his arms and hands, a customized van and a jazzy electric wheelchair, Ryan is more mobile than many Duchenne kids. Yet for his college experience to be a good one, he sought a campus that's not just accessible but fosters a culture of total inclusion. Edinboro's reputation for both, he notes, is exceptional.

Knowing it's impossible to adequately serve every handicap, schools tend to concentrate on certain types of disabilities. At Edinboro, the focus is on students who are blind, have learning disabilities or -- as in Ryan's case -- are in wheelchairs and need some form of attendant care. Currently, OSD services between 400-450 students, or about 6 percent of the university's total enrollment of 7,600.

So far, so good

With so many services in place and people willing to help, Ryan has a pretty good shot at making that difficult transition from high school to college, teenager to adult. But like any other student on campus, he's going to have to make an effort to make connections and build relationships. As Bob McConnell, director of Edinboro's Office for Students with Disabilities, points out, it's those who are reluctant to ask questions or tell people when they're experiencing difficulties that have problems.

Ryan -- who will study marketing -- is off to a good start. His still-bare room could use some better decorations, he says with a laugh, but by Wednesday, just three days after moving in, he's already met everyone on his floor and started to make friends, and not just with other disabled students.

"People come up and say hi," he says. "They don't seem to notice I'm in a wheelchair. I'm really starting to like it."

He's also thrilled with the campus, which has abundant ramps and automatic doors -- though he's not quite sure how he's going to get to some of his courses on time, with just 10 minutes between classes. Looks like he's going to have to drive.

As for the attendant issue? He's still adjusting. His shower on Wednesday, for instance, involved a female aide, which could only be described as "awkward."

Ryan knows it shouldn't be a big deal, since it's her job and she was perfectly nice about it. So, well, he's trying not to think about it. Much.

"Even when my sister helped me, she wouldn't see me with nothing on," he says.