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Thread: Father's creation may aid quadriplegics everywhere

  1. #1

    Father's creation may aid quadriplegics everywhere

    Special girls, special chairs (a 1997 profile of the Miller family)
    Father's creation may aid quadriplegics everywhere



    By Jon Little
    Daily News Peninsula Bureau

    (Published: August 18, 2002)

    Michelle works with her mother Cindy on the day's homework in 1997. (Photo by Anne Raup / ADN archive 1997)

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    Mariyah (left) and Michelle Miller spend time with the family's horses after they're fed when they were 9 years old in 1997. (Photo by Anne Raup / ADN archive 1997 )

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    Mariya (in red) laughs with her twin sister Michelle after doing homework. (Photo by Anne Raup / ADN archive 1997)

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    Click on photo to enlarge

    A groggy Fritz Miller pulled on his bunny boots and set off to buy a flashlight. It was 3 a.m. on a black January night in 1989, and a power failure had knocked out the heater in the small rented cabin where his frail infant twins needed constant care.

    His family of six had been packed in the cabin with two dogs and two cats for a month, since a winter fire leveled their half-finished home.

    The babies, twin girls, had been born with a rare condition that made them quadriplegics. They needed heat.

    As Miller sat in his car that night, warming it up for the drive to the convenience store, it didn't take him long to realize why the power went out.
    Redoubt Volcano, some 60 miles away, had belched a giant cloud of hot ash and the sky was raining mud.

    That was the low point, the Millers say.

    But that winter, the couple decided to rebuild. Because they were starting from scratch, they chose to frame everything they did around their two disabled twin girls.

    Now, eight years later, their love and dedication mixed with Fritz Miller's knack for tinkering has blossomed into a nimble electric wheelchair that has proven so helpful to his girls that it has made health-care experts' jaws drop. In fact, the chair is so unique it could end up helping thousands of people around the country.

    The Millers have two identical prototypes, one for each girl. The chairs lower the twins to the ground so they can play on the floor and raise them four feet so they can play eye-to-eye with their peers. When they gun their chairs to the top speed of 12 mph, it's as if they were running.

    The device, which looks a little like a miniature forklift, could be a revolution in the humble history of the wheelchair.

    "Out of necessity comes your next invention," said Connie Lillejord, director of rehabilitation services at the Jamestown, N.D.-based Anne Carlsen Center for Children. Last spring, Fritz Miller's chairs passed a series of professional tests at the school and therapy center for disabled children.

    Necessity may be the mother of invention, but it doesn't hurt that Fritz Miller is a long-time welder who teaches the skill at Kenai Peninsula College, and his wife, Cindy, had a vision for what the girls needed.

    She already had raised two children. She knew that her girls had to be able to get to the floor and play like other children.

    The Millers are seeking a patent on the device and would like nothing better than to sell it commercially, but they say the point of building the chairs and all the other changes in their lives really boil down to two things: the twins.

    THE INSPIRATION

    Michelle and Mariya, now 9 attend fourth grade at Soldotna Elementary School, where they pull down As and Bs.

    They were born with spinal muscular atrophy, or SMA, a form of muscular dystrophy that leaves their bodies almost totally limp. The genetic disease stems from recessive genes from each parent.

    The Millers have no idea how many children nationwide have SMA, but it's pretty uncommon. "There are four cases in state of Alaska, and we have two of them," Cindy Miller said.

    Severity can range from some muscular control to none, and the Miller twins fall in the middle of that. They can't move their legs or torsos and can barely turn their heads. They can't even roll over in bed without help.

    "If you put one of the kids on a couch, it's a nightmare," their dad said.

    "You've got to change their position, change the TV channels for them, it's a big job."

    What the girls can do is lift their forearms and grasp things with their hands. That's about all the movement the Millers needed to devise a wheelchair that doesn't work as well as legs but is far better than anything on the market, therapists say

    The chairs weigh about 250 pounds apiece. Most of the weight comes from batteries that power three electric motors packed inside an aluminum box. The box sits on four sturdy, rubber tires that can be swapped out for knobby treads that make it run like a four wheeler on the beach. A chair sits on a pair of arms that extend from the box.

    Once the girls are strapped in, they take charge.

    Michelle and Mariya can pilot the chairs though all sorts of conditions. They can balance the chairs on the front two wheels and hop and have taken them at full speed on frozen Sports Lake behind their house, spinning doughnuts.

    Far from forbiding their children from such hard-charging fun, the Millers encourage it. Other parents don't frown on other children horsing around, they say.

    The girls use their piloting skills for more than mobility and fun, though. For example, when one of them slumps to the side, and is unable to right herself, she swings her machine in a tight circle so that centrifugal force can do the work that muscles otherwise would.

    "These chairs have actually become part of their physical being," said Jim Van Sickel, an old friend and retired industrial mechanic who is helping the Millers fine-tune the machines. "If you watch them play, they look like they don't have much wrong."

    But they do. Doctors can't say how long the girls will live. People with this condition rarely live past 40. Some die in childhood. The Millers want their girls to have the fullest life possible.

    A NEED FOR SOMETHING BETTER

    The search for a better wheelchair began when the twins were about a year old. After reading every magazine on disabilities the Millers could, they found two powered chairs built by a British company that has since folded.

    At $10,000, the chairs were wonderfully designed -- sort of the Jaguar of wheelchairs, Fritz Miller said. And the couple was anxious to teach their girls how to use them. When the equipment arrived, the couple cleared a room and settled in for a lengthy lesson. But the twins were zipping around on their own within five minutes, he said.

    But the couple still didn't feel like the girls were getting the best shot at mobility. The chairs lacked power and broke down far too often. So Fritz Miller took apart the British rigs and devised a model of his own in 1993. He has been fine-tuning it ever since.

    "They are very impressive," said Lillejord of the Anne Carlsen Center for Children.

    Lillejord and other staffers at the therapy center recently reviewed the chair at the request of Joe Smith, head of Lutheran Health Services, a Fargo, N.D.-based nonprofit corporation that owns the center and also manages Soldotna's Central Peninsula General Hospital. Smith crossed paths with the girls at the Soldotna hospital.

    He immediately asked the Millers if he could send the twins to the center to show the invention.

    "They had a crowd watching them here," Lillejord said in an interview from her North Dakota office.

    Lillejord was impressed with how the girls could drive over not just sidewalks at the center's playground, but also sand and grass -- terrain that can bog down other powered wheelchairs.

    Lillejord said she was especially impressed when one of the girls saw something in a tree and asked what it was. Lillejord suggested the girl go and see for herself. She lowered her chair to ground level, eased under some low limbs and raised the chair to its full height until she was within two inches of what turned out to be a bird feeder.

    "For me as a therapist, it was a wonderful thing," Lillejord said. "Kids in wheelchairs are extremely limited by the boundaries of what the chairs can do. There's only so much you can teach kids, but there's so much more they can learn on their own."

    If the patent comes through and the Millers can find a manufacturer, Lillejord predicted a market not only for children but also for some quadriplegic adults.

    FAMILY COMES FIRST

    Even if the patent comes through and the couple can build a wheelchair business, the bottom line for the Millers is family, not fortune. It's been that way since their first house burned down in 1989. With two seriously disabled family members and three other children, the family spends a lot of time at home together. They've had to be inventive, supportive and accept a life that the Millers admit is odd and sometimes downright goofy.

    Besides the twins, their sons, Brandon, 18, and Brice, 11, there is Kiara, 2, who is just old enough to get into things. Several horses, pigeons, rabbits, turkeys, chickens and a goat named Valentino live in a barn near the house. Four dogs, four cats, a rat and a ferret live inside with the family.

    The house is an original. The rambling, two-story wood-framed structure has few walled-off rooms, no hallways and more ramps than stairs. In fact, the only two private rooms belong to the sons.

    Built on the slab that held their first house, the place is perpetually unfinished. For years, it has been walled largely with nothing more than a double-pane of thick, clear plastic. Blowers push air into the roughly foot-wide space between the plastic sheets, maintaining an insulating layer of air.

    They have a huge garage, where they park a small bus with a chair lift, and where they build wheelchairs.

    "This is a very unconventional way of life," Fritz Miller said, shaking his head and smiling. "Other people's lives seem very, very blase. I can't imagine doing it any way different than this."

    MAKING CHILDHOOD FUN

    On a recent weekday, Michelle and Mariya came home from school and went out to the barn with their mom to feed the animals. One of their newest acquisitions, a huge Belgian draft horse named Randy, lowered her head over her stall and into tub of grain on Michelle's lap.

    Michelle grasped two joysticks, one each at the end her chair's arm rests. She used them to lift and lower her chair into position. Her feet, packed neatly into blue sneakers, swayed as she spun the machine around.

    Turkeys pecked at slices of bread held out by Mariya, who sat at the controls of her identical machine.

    "The girls spend hours in there with chickens roosting on the back of their chairs," their mother said.

    Like a lot of 9-year-olds, the twins get a kick out of spending time with animals, just about as much as they enjoy sledding, skating, exploring and running around.

    Their parents say they believe that's the stuff childhood is made of, which is one reason why they keep the animals. Even with the chairs, travel for a quadriplegic takes a lot of effort, so most of what the family does centers around the home, Cindy Miller said.

    After school, the twins may pull sleds in the driveway or help feed the animals, but the hours before dinner mainly are reserved for homework, the girls said. And once a week, they attend a dog obedience class with their patient and attentive 4-year-old Springer spaniel, Dulcy.

    Beyond that, life has limits, their parents said. Girl Scouts and other organizations are usually held at someone's house, where access may be iffy. Slumber parties are out of the question because the twins need to be turned every hour as they sleep because they can't roll over on their own.

    While the girls will never be able to do everything other children can, the chairs have given them some options, some control and the ability to feel good about themselves as people with disabilities, Fritz Miller said.

    "We've made do the best with what we had," he said. "That's the key."

    This story was originally published in the Daily News on Nov. 16, 1997.

    [This message was edited by seneca on Aug 19, 2002 at 10:06 AM.]

  2. #2
    Neat story. Maybe this new wheelchair invention will give the IBOT a run for the money?

    Onward and Upward!

  3. #3
    The URL of the article is http://www.adn.com/front/story/1618590p-1723000c.html

    Here is a picture of the device...

  4. #4
    There's a PBS special on right now about the special chairs.

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