Soldotna twins with disabilities star in documentary

Posted: Tuesday, August 20, 2002

SOLDOTNA - Documentary filmmakers from Oregon have spent the past five years filming a remarkable Soldotna family with quadriplegic twin girls.

The result, a 53-minute program called "Normal for Us," aired nationwide recently on public television stations.

Fritz and Cindy Miller, parents of the twins, seem mystified by the attention and the emotions provoked by copies of the documentary they have loaned to friends.

"Some people said they cried all the way through it," Fritz Miller says. He shakes his head and blinks.

"We're a normal family. These kids are regular. They just don't walk," Cindy Miller added.

But what the filmmakers picked up on was the couple's willingness to create a one-of-a-kind home for the sake of their girls.

The twins, Michelle and Mariya, have a rare neurological disorder called spinal muscular atrophy, or SMA. A form of muscular dystrophy, it leaves their bodies mostly limp.

They can't walk or sit up straight, and they barely have use of their hands. They need help to bathe and have to be turned while sleeping.

When the girls were born, the Millers shucked all preconceptions about traditional home life. They wanted the girls to exercise their brains and hearts, even if they couldn't use their arms or legs.

In the process, the couple invented a new type of powered wheelchair that resembles a miniature forklift. And they designed a unique house roomy enough to accommodate two bright children at the controls of the machines.

It's a cheerful, roomy place full of dogs, birds and other animals. Gentle Belgian draft horses and miniature horses live in a stable outside.

"I've got a quote from Cindy saying, 'This is our normal.' It is pretty weird for the rest of the world looking in sometimes," said Wendy Morgan, who produced the documentary with her husband, Lyle.

The Morgans earn a living shooting video for major television networks. But their passion is for longer documentaries.

They stumbled onto the Millers while shooting footage of an Oregon stable that provides horse rides to disabled children. The Millers had written to the stable asking whether it had any animals for sale.

After shooting video of the Millers, the Morgans sold the idea to underwriters. The program, which mixes home video and the Morgans' documentary work, has been picked up by most of the nation's public TV stations, Morgan said.

Camera crews followed the family to a local mall, capturing gawkers staring at the twins. And they filmed the family's painful journey to California for tricky surgery to shore up the girls' spines at age 9.

They tried filming the twins at school last year, but having a camera crew at your heels is embarrassing for any eighth-grader. So they handed camcorders to the girls and asked them to shoot what they wanted, Wendy Morgan said.

Mariya and Michelle are 14 now, wearing makeup and stylish boot-cut jeans. The straight-A students are eager to attend ninth grade at Soldotna High School, looking forward to Spanish-language classes and finally having aides who are closer to their own age. The girls have assistants turn the pages in their books and open lockers for them.

It's part of the Millers' approach of letting the girls explore their world. Sometimes, like all young adventurers, they've gotten into trouble for exploring a little too much.

Michelle recently talked one of the young aides into driving her and Mariya to the Alaska SeaLife Center in Seward -- without telling their parents where they were going.

"We brought you fudge," Michelle said with a sly look, trying to appease her mother.

The girls say they enjoyed the documentary, even though it captures Mariya uttering a four-letter word after she wiped out in her electric wheelchair.

Fritz Miller, a Kenai Peninsula College welding instructor, built the 250-pound, powered wheelchairs, which are steered by a small joystick. The machines give the girls the ability to lift and lower their bodies so they can be eye to eye with a schnauzer one moment and sniffing a sunflower the next. They cruise at up to 12 mph.

The Millers have patented the wheelchairs and hope one day they will be used by other disabled children. Morgan said one of her goals in making the documentary was to get word out about the chairs.

One scene shows the girls feeding birds from a dock, where they were only a jostled joystick away from a dangerous plunge. And there have been times when the twins have been cut and bruised from running around on their wheelchairs. But able-bodied children get into scrapes as a matter of course, Morgan pointed out.

"You can't go around life being frightened," she said. "You've gotta go live life."

Trending this week:


© 2018. All Rights Reserved.  | Contact Us