Soldotna family stresses normal life for daughters

Posted: Monday, August 19, 2002

Cindy and Fritz Miller of Soldotna live in a home that is anything but average.

Amid a sprawling series of barns, horse corrals and gardens sits an even more sprawling house. The walls are made of plastic, the floor covered in mats and the staircase paired with an elaborate maze of ramps.

The family that lives inside matches the home perfectly.

Parents Cindy and Fritz, sons Brandon and Brice, quadriplegic twins Mariya and Michelle and adopted daughter Kiara may be a little unconventional, but like their home, they are amazingly functional and adaptable.

As the Millers tell their family's story, it's easy to see they consider themselves normal. The family works hard to make sure their struggles don't prevent them experiencing an average lifestyle. But the truth is, this family is not quite normal -- they're extraordinary.

The Millers, featured in a documentary film to air Tuesday night on PBS, easily could tell a story of tears and tragedy, a story begging for sympathy and cursing chance. Instead, they tell a story of a family -- a story of love, innovation and unending determination.

The family's story centers mostly around 14-year-old twins Mariya and Michelle. In 1989, the girls were diagnosed with Type II spinal muscular atrophy, a disease in which nerve cells degenerate, destroying muscle tissue. The diagnosis meant the girls would never walk, their physical mobility would decrease with time and their spines would curve, putting pressure on their internal organs -- especially their lungs -- and making every common cold a life-threatening illness. No one knows what causes the disease, and there is no cure.

Doctors were not optimistic, but the Millers are not the type of people to take adversity lying down. They made a commitment to making sure the girls had as much mobility, independence and normalcy as possible.

The first step was finding a way to let the girls move freely. When the twins were 18-months-old, Fritz and Cindy bought them special power wheelchairs from England. The chairs not only moved back and forth, but also up and down, letting the girls pet their animals and play on the floor like other children. They also removed the footrests from the chairs, allowing the girls to touch their feet along the ground and reach for items more easily.

After two years, when the chairs wore out and replacements were no longer available, the family refused to settle for a status quo chair. Fritz, a welder by trade, and family friend Jim Van Sickel started designing chairs themselves. After a series of prototypes, the two finally developed the model the girls use today.

The three-wheel chair goes in all directions, moves up and down, stretches out for a wide range of motion and handles Alaska terrain. Over the years, the chairs have even held special adaptations such as one that shot basketballs. The girls can participate in PE classes, wander down hiking trails and train their horses.

"It's so much better (than a normal power wheelchair). We can't imagine life without them," Michelle said.

In fact, the chairs have become such a valuable part of the girls' life, the family would like to make them available to other people with mobility disabilities.

Fritz and Jim have a patent on the design and are in the early stages of researching the possibility of manufacturing and marketing the chair -- not so much for profit, but for the benefit of other children.

"We can't imagine so many other kids and people not having the whole greatness of the chairs," Michelle said.

But while the chairs make great strides in the twins' mobility, they cannot take away all the barriers the girls face.

Another huge issue for the family is accessibility. While a few public places in the area are wheelchair accessible -- Fritz noted the Kambe Theater, Fred Meyer, Big Kmart and most schools -- many still are not.

Even buildings that claim accessibility often are built to handle manual wheelchairs, which are more maneuverable and often smaller than power chairs.

Then, the girls added, there's parking. Most parking lots do have accessible slots, but the family is still shocked how many people park illegally in the reserved spaces or directly on the ramp.

"The thing the general public needs to understand is that we can park in the furthest space away, but if they park on the ramp, we can't get in," Michelle said.

And, she added, parking far away may be an option in the summer, but not in the winter.

In addition, many businesses refuse to retrofit older buildings for accessibility, arguing that staff members are always willing to help those who need it.

"But that robs them of their independence, their dignity," Fritz argued.

"It's the law," added Cindy. "There's a reason there's a law."

Then there are the questions.

In the documentary, Cindy explained that she tried to teach the girls that their chairs, their beauty, their individual specialness is what makes people stare -- but that doesn't stop the family from getting frustrated at the looks and questions.

Michelle, for example, tells a story of a recent experience at the fair. A woman approached her and Cindy and, slowly and loudly, asked Michelle how she was. Michelle answered, "Fine," but the woman turned to Cindy and asked if Michelle was deaf.

"People assume we're deaf, that we can't speak," Michelle said. "Just the other day we got called midgets.

"Assumptions are dangerous," she said.

"We get some very strange questions," Mariya added.

Despite the frustrations, though, the girls keep things in perspective.

"They are two of the toughest kids," Cindy said. "They've put up with a lot of experiences other people don't experience."

They deal with the lack of accessibility and public awareness with a little anger, a little teen-age sarcasm and a little laughter. And, they go about living their own lives.

The girls will start ninth grade this week -- they'll split their days between Soldotna High School and home-school -- and are excited about the opportunity to take art and Spanish courses.

They dream of becoming horse trainers, enjoy their own personal zoo of pets -- especially their newest puppy, Loki -- and love watching movies.

They -- along with the rest of the family -- know that every day can bring a new challenge, but they also know they will do what they must to meet it. Because as Cindy repeatedly says, "This is our normal."

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