Making every day count: Living with cystic fibrosis
Maggie Sheehan is among the first generation of children with cystic fibrosis (CF) to go to college or even to reach adulthood.
Nine years ago, Maggie's beaming smile graced the cover of Children's Memorial Hospital's magazine, Carousel, now Heroes. Back then, Maggie was described as an energetic and fun-loving 9-year-old who loved to sing and dance. While she became aware at a young age of the challenges of living with CF, she did not let it dampen her zest for life.
Today, Maggie is still energetic and fun-loving. Her interests are those of a typical young woman her age – socializing, shopping and cheerleading. In spite of the fact that her disease has progressed, Maggie was a varsity cheerleader, graduated from high school with honors and recently entered her freshman year at DePaul University.
“I know CF is hard, but I have chosen to enthusiastically live a full life,” she says.
In 2006, Maggie was awarded the Heroes for Hope™ Award by Genentech, Inc. in recognition of her positive attitude and tenacious spirit, her work on behalf of children and adults living with CF, and her commitment to proactively managing her health.
CF is a genetic disease affecting about 30,000 people in the United States. A defective gene , known as CFTR, causes the body to produce a faulty protein that leads to abnormally thick, sticky mucous that clogs the lungs and obstructs the digestive system. This can result in chronic lung infections and difficulty digesting food and absorbing nutrients. Although there is no cure for CF, treatments include dietary enzymes and supplements and various methods and medications, such as antibiotics and inhaled steroids, to clear the airway and improve lung function.
Taking charge of her health
Of the many gene mutations that cause CF, some, such as the kind Maggie has, result in symptoms that tend to be more severe than others. Maggie takes her complex health regimen very seriously. It includes taking about 30 pills a day, regular exercise and several hours of breathing treatments and chest physical therapy, where she wears an inflatable vest that pounds her chest to loosen the secretions in her lungs.
One of the biggest recent changes for Maggie and her parents, Kerry and Edward Sheehan, is that Maggie is starting to manage her own health care, such as keeping track of her many prescriptions and making her own doctor's appointments. “She's 18 now and going off to college,” says her mother, Kerry Sheehan. “It is a huge job, so we're making the transition gradually.”
Maggie's parents are also adjusting to their daughter leaving home to start college and live in the dorm at DePaul. “They say starting college can be rougher on the parents than the kids,” says Edward Sheehan. “But we're just really proud of how far she's come. She's having some great experiences and making friends she'll have for the rest of her life.”
New hope for longer life
According to the Cystic Fibrosis Foundation, prospects for kids with CF have improved dramatically in recent years. Today, the median age of survival has risen to almost 37 years. In the last four years alone, more than five years have been added to the median survival age. Much of the improvement in length and quality of life for CF patients is attributed to better therapies developed as a result of research, standardization of care and the implementation of “best practices” throughout CF Foundation-endorsed care centers, such as Children's Memorial. “But people living into their mid-30s still isn't good enough,” says Maggie.
Maggie's doctor, Susanna McColley, MD, says, “While CF care is steadily improving, we hope that research, like that being conducted by Dr. Ann Harris at Children's Memorial Research Center, will lead to novel therapies that will treat the underlying problem of CF, the abnormal gene and the abnormal protein it produces.” McColley is head of pulmonary medicine and director of the Cystic Fibrosis Center at Children's Memorial, as well as associate professor of pediatrics at Northwestern University's Feinberg School of Medicine.
Making progress happen
Since Maggie was diagnosed with CF, she and her family have raised more than $900,000 for research, educational and patient support services, and CF awareness through Cystic Fibrosis Foundation and Children's Memorial. Through their foundation, Maggie's Miracle Makers, the family donated $10,000 and a dance exercise system to Children's Memorial in 2006. The system helps CF patients exercise while hospitalized.
“Years ago, kids with CF would not have made it this far in life,” says Maggie. “The people who surround me have made my life worth living – my friends, my family, and my second family — the staff that takes care of me at Children's Memorial Hospital. Without all of these people, I would be lost.”
Children's Memorial Hospital seeks philanthropic funding to enhance its programs and services. As a proud partner of the Children's Miracle Network (CMN), all funds raised in the Chicago area through CMN also benefit Children's Memorial. To find out how your support can help the hospital better serve children and families, please contact the Children's Memorial Foundation at 773.880.4237 or Foundation@childrensmemorial.org.