ALAMEDA -- Jeremy Kharrazi was 3 years old when his parents, Lisa and Martin, got the heartbreaking news.
Their son had cystic fibrosis, an inherited disorder in which an abnormal gene causes progressive damage to the lungs, pancreas and digestive system. The Kharrazis knew little about "CF," and what they did know was terrifying. Mucus in cystic fibrosis patients is very thick and accumulates in the intestines and lungs. Unless aggressively managed, this leads to frequent respiratory infections, breathing difficulties and permanent lung damage.
In 1938, when it was first recognized as a medical condition, most babies with the disease did not live beyond their first birthday. Life expectancy had improved by the 1950s, but even then, people with cystic fibrosis usually died in childhood. Born in 1990, one year after the pivotal discovery of the cystic fibrosis gene, Jeremy was comparatively fortunate. But the toddler still faced chronic illness and an uncertain future.
With three young children and expecting another, Jeremy's parents were devastated and overwhelmed by the diagnosis. But the couple wasted no time fighting back on Jeremy's behalf. Keeping Jeremy healthy became a way of life in the Kharrazi household, and the family's fight against the disease was just beginning.
"We just took it on," said Lisa Kharrazi.
Jeremy's father, a Columbia University-educated epidemiologist, switched gears mid-career and began working with the genetic disease branch of the California Department of Health Services to develop newborn screening for the disease. As the children grew and Jeremy struggled through years of tests and treatment, his parents and siblings embraced cystic fibrosis advocacy in order to educate the public and raise money for research.
By the time Bethany Kharrazi was born in 2000, her family had coexisted with cystic fibrosis for 10 years. Jeremy's health condition has been a part of her childhood. With serious brown eyes and a confident, thoughtful demeanor, the Alameda Community Learning Center seventh-grader seems wise beyond her years.
"Jeremy having CF has made me stronger as a person," she said, "and even though I'm the little sister, I have always helped care for him."
Growing up in a family affected by CF has made the Kharrazis extremely close, and Bethany Kharrazi feels that being a "CF sibling" has shaped her in important ways.
"I'm very different from everyone else in my class," she said. "Growing up with a brother with cystic fibrosis gives you a whole new point of view."
Along with a deep empathy that her mother said is ingrained in her daughter's personality, Kharrazi's altered perspective appears to be one of priorities. She is less likely than her peers to get upset over minor disappointments, and she is used to making sacrifices to safeguard Jeremy's vulnerable immune system.
"Most people have pets," she explained as an example. "But we obviously don't because we have to keep our house so clean."
It is clear that the overall tone of the household is positive, but Bethany's childhood has not been without its scary moments. She recalls her brother's bout with pseudomonas, a life-threatening bacterial infection, and the time he came home from a trip to Peru 25 pounds underweight.
Watching Jeremy fight cystic fibrosis has made Kharrazi a fighter. For the past two years, she has been a team leader for the Great Strides Walk-A-Thon to raise funds and awareness. Following her bat mitzvah in February, when she made a donation to the Cystic Fibrosis Foundation and other causes, Kharrazi decided to participate in the Teen Advocacy Day to further her efforts to improve the lives of individuals with cystic fibrosis.
On June 28, Kharrazi joined other young people from across the United States to urge elected officials in Washington, D.C., to support cystic fibrosis drug research and development and to protect health coverage for people with the disease. Specifically, teen advocates discussed ways to enhance the review process at the U.S. Food and Drug Administration and spoke about the importance of increasing funding for the National Institutes of Health and the FDA in the coming year. During the event, Kharrazi met with California representatives.
"It was exciting to meet elected officials and help them understand CF," Kharrazi said. "I know firsthand why we need to hurry up and get new medicines that treat CF, and I want people in Washington to understand, too."
The Kharrazis' tireless efforts to defeat CF have already paid off in the life of one person. This year, as his family looked on, Jeremy Kharrazi graduated from Vanderbilt University with a bachelor's degree in anthropology. He has inspired in his sister a passionate commitment to social change.
"Once you find what really motivates you, you can go so far," she said. "If everyone did their part, our communities could be so much better. And we can't just hope for it. We have to do it."