If Nancy and Andy Sando's house were a body, the bedroom would be its heart. Nancy calls it "the room of many doors" because, with six wide portals, you can get to anywhere in the house from there-including the front porch.

Oversized sliding glass doors run along one wall, leading to a wooden deck and ramp that greet the couple's visitors. But Nancy and Andy satisfyingly note another benefit, one that would drive the selling price up in just about any real estate market: it opens the room to tons of sunlight.

Fourteen years ago, Nancy Sando turned a difficult situation into an opportunity. While getting a ride from a public accessible-transportation service, she was severely injured in an accident caused by the lack of a safety feature on the van's wheelchair lift. The company's insurance agency recommended that she move into a facility that offered full-time care. Nancy fought the decision and won financing to build a home where, with some help, she could care for herself. She purchased a ranch house in her rural, northern Michigan hometown and redesigned it into the highly accessible home that she has shared with her husband, Andy, since 1988.

The bedroom sits at the center of the house, and bridges the original structure with the 1,000-square-foot addition that Nancy, who originally lived in the house with her sister's family, began working on in 1986. As she built the add-on, Nancy says, there was one main feature she was certain about: there would be no tight corners to fuss with in a wheelchair. "My feeling," Nancy explains, "was why have them at all if they're just going to be a frustration?" As a result, other than the bedroom and bathroom, the home's primary space is one vast open area, which Nancy calls "the great room," organized in quadrants-an office area, a kitchen, a living room and a photography studio. Think New York City artist's loft transplanted onto a sprawling lawn in Petoskey, Mich.

Independent living on the upper peninsula

The Sandos both have fibrodysplasia ossificans progressiva (FOP), a rare disease that gradually transforms soft connective tissue throughout the body into cartilage and bone. While the disease leaves most people entirely healthy in every other aspect, its aggressive assault on an individual's mobility, and its uniqueness, make FOP one of the most challenging disabilities for the independent living movement to tackle.

"It's rare," explains Dr. Susan Williams, who coordinates the Patient Needs Program for the International FOP Association (IFOPA). "And the kinds of disabilities that result from FOP are significantly different than the kinds of disabilities that result from MS or some other condition. ... It's much more complex and much more expensive as a result."

Nancy, now 41, was diagnosed with the disease at age five. The first doctor she visited told her parents that she had a terminal cancer. But in searching for a cancer specialist, the family came across one of the tiny cadre of physicians who had some understanding of FOP. Nancy remembers him saying, "You don't have cancer, you're not going to die, but you're going to have some challenges.'"

While working as a computer programmer in Petoskey in the early 1980s, Nancy cut her teeth as a disability rights advocate. She challenged two local personalities, a reporter and a Kiwanis club member, to spend a day running errands in manual wheelchairs. Nancy says the experience gave them a sense of vulnerability-and awareness. "Our town is built on a hill. It was in dire need of curb cuts and door accessibility."

Shortly thereafter, Nancy met a woman from North Carolina who also had FOP. Such first contacts with fellow FOPers are watershed moments in the lives of most people living with the disease-Nancy remembers it as like meeting "a long lost relative." She went on to assist in establishing the International FOP Association (IFOPA) in an effort to help others connect.

Access by association

In 1988 Andy Sando was living in St. Joseph, Mich., approximately 300 miles south of Petoskey. The company that configured his wheelchair had also worked on Nancy's, and knew about the IFOPA's efforts to build bridges. They gave Nancy his name and she reached out to him. It was his first contact with another person with FOP and it was love at first phone call. The couple got to know each other through letters and lengthy telephone conversations-"Michigan Bell just loved us," they laugh-and married later that same year. Several years later the couple transformed one quadrant of the "great room" into photography studio. Andy, 42, uses it-as well as the rear deck and large backyard that it opens onto-to shoot wedding pictures and take portraits for families and high school seniors. He encourages clients to bring props, which he arranges to create backdrops for each portrait. Andy has also designed an adjustable extension bracket that attaches to the base of his cameras and allows him to maneuver and focus the equipment.

Similar low-tech and inexpensive gadgets that remove barriers are sprinkled throughout the Sandos' home. In addition to computer consulting, Nancy types a church newsletter and handles the family finances via computer. Andy runs much of his business electronically. Their computer keyboards rest on adjustable stands-designed by Nancy's father-that allow both of the Sandos to move the keyboards to meet their hands. Desks and counters sit higher than standard and are cut deep enough to accommodate long leg rests. Light switches are installed at appropriate heights, faucets are placed on the right side of the sinks, and doors recede into walls rather than swinging in and out.

The inside story

Interior surfaces were also installed with wheelchair use in mind. Nancy chose to have most of the floors tiled rather than carpeted to cut down on the expense of replacing rugs worn by her chair's wheels. After a few years of living in the house, the couple tired of repairing gashes in the plaster caused by banging wheelchairs, so they lined the lower half of the only hallway in house with Plexiglas.

A live-in assistant now occupies Nancy's original house, which has separate ramped entrances from the front and rear. A wide passageway with only one turn leads to the Sandos' bedroom-which connects the two structures. In addition to their live-in aide, the Sandos employ a significant staff-about10 people-who come in throughout the week to help out. They do little of their own cooking, for instance, and require assistance for some tasks that involve getting in and out of their chairs.

One area where they benefit from this sort of help is in the bathroom, but Nancy designed the toilet area to minimize that need. It sits back into a pocket, with high walls on either side that she and Andy can lean on, or that will catch them in case they fall-reducing the potential of injury. The toilet itself is built onto a four-inch base, making it easier to use without bending at the waist.

But perhaps most importantly, the Sandos' home allows them to enjoy many of the mundane luxuries of life as a couple. One of the features Andy and Nancy most relish pointing out is the solution they came up with for the age-old marital ritual of watching television in bed. While Nancy prefers to sleep on her side, Andy sleeps on his back. Since neither can turn at the neck, they aren't able to look in the same direction while laying in these positions. So they put one television at the end of the bed, sunk another into a wall at the side of the bed and connected them to the same VCR so that one remote changes the channels on both sets.

A similar dilemma involved figuring out a way that they could turn over in bed without the help of an attendant. The solution, Nancy says, could be replicated with things anyone has around the house: a straight-back chair and a luggage strap. First, the couple built a hump into the foot of their elongated bed. The end of the bedspread rests on this protuberance, which prevents their feet from getting tangled in the sheets as they turn. (Nancy notes that she could just as easily drape covers over the back of a chair in a pinch, if staying in a hotel for instance.) Next, they attached a nylon strap to either side of the bed (any long luggage strap will do), running it over the top of each person. The Sandos tug on the strap to pull their bodies from side to side as desired.

Yet, despite the practical, relatively cheap solutions the Sandos have discovered, some things are unavoidably expensive. And their ability to acquire those things is an indisputably unique privilege. Nancy's settlement with the transportation company has provided them with resources the average person would not likely have. IFOPA's Williams notes that her son's bed-which stands up and, thereby, allows him to get in and out of it on his own-cost $14,000. The cheapest wheelchair for a person with FOP is about $30,000, and usually does not quite meet the needs of a person who can't shift his or her weight or, in many cases, even sit down.

Common-sense answers to complex equations

Williams says a primary goal of the IFOPA's Patient Needs Committee (the group is in the process of changing its name; members feel it is too pathology-heavy) is to help people find ways to live independently despite the expense. The organization doesn't have the resources to help find funding, but, through its network, keeps information and advice flowing from people like the Sandos to those searching for solutions. In most states, Williams says, there are channels to get necessary technology paid for by public health insurance programs-it's just a matter of finding them.

"Be persistent," Williams advises. "You'll probably need to go through three or four levels of appeals. ... The funding challenge is the biggest one of all." FOP's rarity and often sudden onset further complicate matters. A person who has the disease can go to sleep with a fully functioning jaw and wake up the next morning with it fused shut. Because there are few specialists and most individuals live as the only person in their community with FOP, help and advice in dealing with such a dramatic transition can be hard to find.
Simple answers are often elusive in such tumultuous situations. Nancy recalls being contacted by a parent whose teenage daughter's arms had recently locked at her side. As a result, the parent complained, the daughter couldn't apply deodorant and had become even more self-conscious about attending school than usual. Nancy reminded the woman of spray-on deodorant.

This is the kind of common sense help the IFOPA can offer through its network. Nancy suggests that that parents of children with FOP focus early on preparing their kids to face a life of sudden changes and immobility, and teach them the skills to live independently, rather than running from doctor to doctor. "The younger parents are saying, 'Cure, cure, cure.' But we, as adults living with the disease, are saying, 'Make your child as independent as possible.'"