[BobbyB]

Doll maker shows grit in ALS battle
By Tim Gallagher Journal staff writer


Sioux Cityans Denny and Mary Krier have fought ALS since 1998, when Mary was diagnosed with the disease. She was given two to five years to live at that time. The couple raises money for the Iowa Chapter of the ALS Association, the group to which they turned for help nearly a decade ago. (Photo by Tim Gallagher)


The toughest lady in town moves only her right index finger. With it she makes dolls, writes senators and battles the disease that gave her two to five years to live, tops.

"That was nine years ago," says Sioux Cityan Mary Krier of her ALS diagnosis Dec. 19, 1998.

"She was basically told to go home and get her affairs in order," says daughter Amy White. "She and my dad were supposed to come back to the doctor and discuss end-of-life measures."

Ha!

"Needless to say, we didn't go back," White says, stroking her mother's right hand.

"I am not dying," Mary Krier adds, noting her mind and memory remain keen, even if her arms and legs don't move. "I am living with ALS! I plan on living another decade."

If the past nine years are any indication, she'll spend the next decade keeping busy. The Krier home on South Lakeport is a sweatshop of sorts, as Mary supervises husband Denny in creating life-size dolls they market worldwide.

Proceeds go to the Iowa Chapter of the ALS Association, which funds research to find a cure for amyotrophic lateral sclerosis, a neurodegenerative disease that attacks nerve cells in the brain and spinal cord. The ALS Association estimates 30,000 U.S. residents suffer with ALS, commonly called Lou Gehrig's disease. Another 5,000 are diagnosed annually.

Most die within five years of learning they have the disease. Only 10 percent survive more than a decade, according to the Robert Packard Research Center at John Hopkins Hospital in Washington, D.C.

Mary Krier has read the stats. She's more interested in living. In helping herself. And aiding others.

She smiles and returns to work with Denny, creating the dolls that overtake their little home on the corner of South Lakeport and Glenn.

"We've sold more than 540 dolls. They've been sent to Canada, Australia, London, Germany, Japan and all over the United States," she says.

Her angels once took flight

Mary, a former gift shop owner and crafter, started an angel pin project to raise money for ALS research nine years ago. Angels, she says, are the sign of hope. She moved on to these wooden dolls and now sits in her wheelchair surrounded by more than a dozen. Motorists mistake one on the porch for a person. As we speak in the living room another doll falls, bumps her head and loses her hair.

Everyone laughs. Daughter Amy reaches down and sets the doll back in her chair. "They know we're talking about them," she says.

People will be talking about ALS Sunday as Krier's family hosts the first Walk to "D'Feet" ALS at the Anderson Dance Pavilion on the Sioux City riverfront. More than 10 teams aim to raise $25,000. Krier's grandson, Andrew White, recruited his high school football team to walk for the cause.

"My family has done everything for me since my diagnosis," Mary says, noting her grandchildren can replace her ventilator tube when it falls from her neck. "My family is the reason I fight to live."

The Kriers fight for others, too. The family traveled to Washington to lobby Congress. Mary e-mails Sen. Tom Harkin frequently. They're storing the cord blood from a granddaughter's birth five years ago in hopes they can use it if and when lawmakers expand stem cell use.

"Stem cells: That's where the answer is," says Mary, 63.

Insurance is another matter. The Kriers were fortunate to be completely covered for three years. But the day their two-year COBRA insurance extension ended, nurses stopped coming. Her 'round-the-clock care was left up to Denny, a former grain elevator manager.

"Medicare is her primary insurer, but they won't pay for in-home care for an adult with ALS who is on a ventilator," says Amy, one of two registered nurses in the family.

Mary looks frustrated. I sense she'd pound her fist if she could. Instead, she takes a deep breath and labors through her protestation. "I paid into Medicare my whole life and now I need it. If I could, I'd be working," she says. "I'm not here by choice."

So, she keeps e-mailing those who act. She and Denny make dolls. They collaborate on a cookbook. They create wallpaper based on prints taken from a family photo album that chronicles the lives of their four children and 13 grandchildren.

"We did this because she can't turn the pages in the album," Denny says, studying their wall of photos.

And Mary studies a variety of programs on her lap-top, touching buttons with that index finger. She passed 15 online exams recently to become a certified Print Shop Pro. She had 15 weeks to go through the course if she wished.

"She went through in 15 days," Denny says, beaming her way.

Mary's race through the course illustrates determination.

It's not that she doesn't have time. She has 15 weeks, easy.

"I'll live another 10 years," she says.

ALS walk
The Iowa Chapter Walk to "D-feet" ALS starts with registration at 12:30 p.m. Sunday at the Anderson Dance Pavilion in Sioux City. The walk, which will help support programs and services that aid Iowans with ALS, will go from 1:30 to 3:30 p.m. For information, call Jason Lee at (515) 727-1677. For additional information, see ww.alsiowa.org.

http://www.siouxcityjournal.com/arti...72000135c5.txt