Fragile Bones, Bold Ambition

Brianne Schwantes came into the world with 13 broken bones. Doctors said she probably wouldn’t live a day. A rare and incurable brittle-bone disease called osteogenesis imperfecta made her skeleton fragile.

Yet as her first hour stretched to two weeks, relatives poured in to meet the infant who lay motionless on a feather pillow. No one wanted to touch her, lest she break a bone. That’s when small, quiet Grandma Eileen scooped tiny Brianne onto her shoulder and turned to face the family. “No one should be taught to be afraid of life,” she said. “Bad things are going to happen, and we’ll just deal with them one at a time.”

From then on, Brianne’s parents did everything they could to give her a normal life. Even as doctors said she probably wouldn’t walk and told her parents to find her a good nursing home, Brianne defied the odds. Even as she broke too many bones to count, and spent long periods in cutting-edge research at the National Institutes of Health, she became an activist and big volunteer.

“There was no other option than NOT volunteering,” says Brianne, of Slinger, Wisc., now 27 and a graduate student at University of Wisconsin—Milwaukee. “I saw things I wanted to do and I just did them.” The sentiment reflects her personal philosophy: “No matter what the obstacle or problem facing you, life is about two choices: You can choose to give up, or you can choose to stay your ground and fight… and succeed.”

So at age 8, she testified for the first of seven times before Congress to ask for more funding from the National Institutes of Health. At 12, she started a quarterly news letter called Little Bones for kids with rare diseases, reaching 5,000 subscribers with stories she wrote and edited. At 15, she worked with Franciscan missionaries to raise more than $25,000 for South African orphans. At 18, she counseled at Camp AmeriKids, serving kids with HIV and other life-threatening illnesses. Throughout college, as a volunteer with the Heart of America Foundation, her humor-enlivened speeches to more than 5,000 teens stressed the importance of volunteerism. “You have to do what you can to make the world a better place,” says Brianne, whose 4-foot-6 frame is towered over by middle-school students. “People make a difference in small ways, in big ways…. It doesn’t mean you have to start a giant project all your own. Every little bit helps.”

Dr. Lynn H. Gerber, formerly of NIH, watched with admiration as Brianne grew up. “From very early childhood, Brianne has set her sights on goals she wishes to achieve. These have included education, travel, independence and career,” says Gerber, now director of the Center for the Study of Chronic Illness and Disability in the College of Health and Human Services at George Mason University. “And she has been a bit of a risk taker—competing in swimming at school and even winning a competition in upper-extremity strength.”

Perhaps Brianne’s most heart-wrenching act of volunteerism was when she was 13. Sitting on the living room floor eating ice cream in front of the TV, images flashed on the screen: a house under water, teddy bears bobbing in flood-waters, belongings washed away. In what was termed a 500-year flood, the Mississippi River had overflowed its banks and flooded parts of the Midwest, including Iowa’s capital, Des Moines. “We’ve got to go,” Brianne told her parents.

Her mother, Terry, recalls her first thought: “One fall, and that’s all.” Yet, she had to give in. “Brianne’s always thinking about everybody else. What always sticks with me is how hard she works. She gets in there, and she just doesn’t stop.”

Brianne organized supplies as a volunteer at that 1993 flood scene. Her mom and sister handed out water. Dad stacked sandbags. “It was possibly the dirtiest, most heart-wrenching work I’ve ever done,” Brianne says. But she didn’t get hurt. “I think somebody was looking out for me.”

Surveying the disaster, President Bill Clinton encouraged volunteers and took note of Brianne. “Very few of us have to take the risks to serve that Brianne Schwantes takes every day,” he wrote in his 2007 book, Giving.

Best friend Alissa Nonis, a former college roommate, says Brianne “will take the time to send a care package to the soldiers. Or go speak to kids about public health or literacy or anything. She always is willing to give more of herself, no matter how tired she is, which is amazing for somebody who has those types of problems.”

Brianne has broken bones ranging from tibias and fibulas to fingers and femurs. “People always ask me if I’m nervous about breaking a bone or getting hurt, and they think I’m lying when I tell them I’m not,” she says. “Throughout my life I never once gave myself the option of not recovering.”

Pamela Landwirth, president of Give Kids the World, a nonprofit organization for which Brianne interned, says her enthusiasm is infectious. Sometimes, the only limitations in life are in a person’s mind, but in Pamela’s view, “Brianne has no limitations. She just does it.”

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