KEARNS — Struggle is no stranger in the life of Mandi Shaw.
The 47-year-old Kearns woman has spent her life dealing with severe, debilitating birth defects. And in recent years, heart problems have rendered her permanently disabled and unable to work. She has only 20 percent of normal cardiac capacity.
In 2010, her husband died from cancer.
Now, her only income is a small disability check.
Shaw is far behind on the mortgage payments on her small home of nearly 20 years, and she has little prospect of ever catching up.
With no family to fall back on, she and her 19-year-old daughter, Cortney, are facing the very real possibility they may soon be living in their pickup truck. Instead of Christmas cheer, they experienced a grinding anxiety.
In desperation, they are making a public appeal for help. A video on YouTube titled "Save Mandi's House" depicts their plight, but it's gotten only about 100 hits.
Since she graduated from Kearns High School in June, Cortney has struggled to pick up the slack in the family budget. She had been working two part-time jobs but recently lost one. As a janitor at a recreation center, Cortney earns $7.80 an hour working about 20 hours a week.
That leaves her far short of the $729 she needs to pay the mortgage — the contribution she must make to the family budget.
Cortney is scouring the streets hoping to find more work, but jobs are hard to come by, and although she comes across as articulate and personable — perhaps mature beyond her years — her skills and experience are limited.
Ron Baker, who runs a small insurance agency, has championed their cause. He met the family as a volunteer LDS service missionary when he was assigned to give them financial counseling. He's made it his personal crusade to keep them in their home and help Cortney get better employment.
Even before she was born in 1964, Mandi's cards were being dealt from a deck steeply stacked against her.
She says her mother was working to put Mandi's father through medical school, and Mandi's conception came as an unwelcome surprise, so the couple decided to put the baby up for adoption.
Her birth defects may have contributed to their decision, Mandi says.
There were no takers. No one wanted a disabled child facing lifelong medical problems.
She said she was turned over to the state. Two nurses from the hospital agreed to take turns raising her.
Mandi spent her childhood in and out of hospitals. At birth she had a dislocated hip that had to be fixed.
She also had clubbed feet, which meant that as she grew, doctors had to slice open her calves and stretch her Achilles tendons every six to nine months. Without the repeated procedures, she said she would have had to walk only on her tippy toes.
After each operation, she had to learn to walk all over again. And by about the time she recovered, the process would begin again.
"This was the childhood I had," she said. "Hospitals and surgeries and braces and stuff like that."
She was also born with useless, shriveled fingers that extended from a stub of a right forearm lacking a hand. Eventually, they were surgically removed so she could be fitted with a prosthetic hook. But she found it easier to just use her bare stub as her hand. It's of more use than her intact left hand, she says.
That's because at birth her left arm hung limply from her side, Gumby-like, she said. Doctors had to switch her bicep with her triceps and fuse her elbow into a permanently bent position. That allows her to raise the arm to about chin level and have some use of it.
But since she's just under 5 feet tall, it's extremely hard for her to reach things up high.
Additionally, she said she was born with teeth so soft that from age 15 to 21 she lost them all. Since her jaw is misshapen from her birth defects, she cannot be fitted with dentures.
So, she is left toothless, but somehow manages to chew even steak with just her gums, she said.
As for family, she did meet her parents later in her life. But she said they seemed to want little to do with her. And family members on her husband's side lack the means to help. So unlike many people who face losing their home, Mandi and Cortney say they have no one to fall back on.
"Most people can bounce back after they've had such difficulties," Baker said. "But Mandi doesn't have any bounce. I mean, how do you bounce back from what she's gone through?"
The cause of her birth defects is uncertain. Her birth parents have said her birth was premature, according to Mandi.
But in the early '90s, Mandi and her husband consulted a geneticist to see if they could safely have a child who wouldn't inherit any physical defects.
The geneticist researched her medical records, evaluated her symptoms and said her birth defects were possibly either caused by Thalidomide or another drug that was used to treat cancer, Mandi said. At the time, Thalidomide was often prescribed to treat morning sickness until it was found to cause birth defects, including missing or deformed limbs.
But the geneticist ruled out Thalidomide as the most likely cause, Mandi said. Possible use of the anti-cancer drug better accounted for her particular defects, he told her. The geneticist also told her that the drug might have been taken to induce an abortion to end the unwanted pregnancy, a procedure that was illegal at the time, according to Mandi.
However, the exact cause of her birth defects may remain forever uncertain, Mandi said, because some of the medical records were missing.
The geneticist did locate a record of her mother's labor, Mandi said. It showed that the pregnancy was carried to full term and that labor was induced, she said.
Her parents were planning to send her to an orphanage in Chicago, and had even arranged the flight, Mandi said.
But the doctor who fixed her dislocated hip wouldn't stand for it. He feared that in Chicago, the child would face worse prospects in life than if she stayed in Utah.
She became a ward of the state.
Whatever the exact circumstances surrounding her birth, recent years have brought her even more struggles.
From 2004 to 2008, Mandi said she suffered five heart attacks.
Then, on Oct. 31, 2009, her husband, who had worked as a laborer for a packaging manufacturer, was found to have pancreatic cancer that had already metastasized to his liver. Seven months later he died.
With her mother's limitations, much of the care for her dying father had fallen to Cortney, and she missed much of 10th and 11th grade.
"She stepped right up; she didn't hesitate," her mother said.
Losing so much ground in her education, Cortney was tempted to drop out. But she knew it was important to her father that she walk across the stage to get her diploma. With the support of her mother and dedicated school counselors, she says, she stuck it out and earned a GPA around 3.0.
But since she was already 18, graduation also meant she no longer qualified for the Social Security survivor benefits she had received since her father's death. The family income took a critical $1,000 hit.
Cortney would have to forgo college for work.
Previously, Social Security rules allowed the child of a deceased parent to continue receiving benefits while continuing education beyond high school.
She loves animals and dreams of someday becoming a veterinarian. If the family's financial crisis can be held at bay, she hopes to take classes at Salt Lake Community College, perhaps to become a nursing assistant.
Until then, she'll take any work she can get, she says. Besides janitorial work, she has experience as a cashier. But she hasn't done well at work that requires "up-selling" to customers.
Baker, who is championing the family's cause, set up a special account at Granite Credit Union to gather donations to save the Shaws' home. Money in that account can only go toward mortgage payments, said Mary Woodard, Granite's vice-president of operations.
So far, mostly from hitting up everyone he knows, Baker has collected only a few hundred dollars. His hope is for a few thousand.
He wants to give the family a cushion until Cortney can develop her career. The goal is the family's self-sufficiency, he says.18 comments on this story
"We're helping Cortney get on her feet to help her mom," Baker said.
"There's an immense amount of joy in this business of helping people," he said. "The appreciation Mandi has is overwhelming.
"She's got a big heart and a strong will and she just goes forward."