There is little doubt that Kayla Bowyer is a special young woman. The 18-year-old Dinwiddie County native was diagnosed at 3 months old with cystic fibrosis. Doctors gave her no more than 10 years to live.
Now Kayla has grown to be a confident young woman, who has learned to live her life with death as her constant companion. with her uncompromising optimism and strength, she has touched and inspired family members, friends and everyone else who has come into her life.
In her young life, Kayla has seen good friends die of the same disease. She has learned to withstand pain and discomfort. She has learned to deal with the countless treatments, pills, hospital stays and a few brushes with death.
She had to accept that she might never be able to hold a job for longer than a few days, that she may never get married nor have children. And she is uncertain about how to pay for her medical care in the not too distant future.
But a dedicated group has rallied around Kayla to at least help her with her medical bills. on Friday night, a benefit was held Kayla, sponsored by the Colonial Heights Jaycees. The event at the Petersburg Civic Center featured live music and silent auctions.
Admission was $10, but the Jaycees will accept additional donations for Kayla.
Currently, Kayla is covered under her father’s health insurance, and since health care reform kicked in, she will be able to stay with his plan until she is 26. Kayla will eventually need a double lung transplant. The transplant is covered by their health insurance provider, but some of the medications, such as the anti-rejection drugs, are not. Kayla’s condition costs at least $10,000 in co-pays and prescriptions every year – a constant financial challenge.
But money is probably the least of Kayla’s concerns. She has had death as a constant companion in her young life. once Kayla had learned of her disease, she was determined to not let it define her. “I had a happy childhood,” she says. “I actually had fun when I had to go to the hospital, because I didn’t have to go to school.”
At the hospital, she often made friends with other CF children. While death constantly lingered over all of them, Kayla made a point to not think about it.
But there was no escape from it. “It was perfectly normal for me to make friends at the hospital, and when I came back two months later, they’ve died,” Kayla says
Kayla met Tommy in the hospital, when she was 5 years old. Tommy had CF, like Kayla, and they quickly became friends. when Tommy died in 2008, something changed in Kayla.
“We grew up together. it really hit home,” Kayla says. Today, she has his name tattooed on her back. And she thinks more about her own mortality.
Cystic fibrosis, a condition without a cure, is caused by a mutation in the gene for a protein called cystic fibrosis transmembrane conductance regulator, which regulates sweating, digestive juices and mucus. Among the more serious symptoms are breathing difficulties caused by lung infections. Other symptoms include sinus infections, diarrhea, poor growth and infertility. About 30,000 Americans have CF. Few make it past their 30s.
After graduating from Dinwiddie High School last year, she moved in with her dad, Roger Bowyer, and his new wife in Hopewell. For a while, she worked at a pet store, but that didn’t last very long, because of the many sick days and hospital stays.
“This is the life I know,” she says, sitting on a couch in her dad’s Hopewell home, wrapped in a blanket. “I’ve never known anything else.”
At home, Kayla’s entire day evolves around her condition. because she hardly digests anything, she must eat at least six or seven times a day, and must take in twice as many calories as a healthy adult, which is not easy. Kayla also suffers from diabetes, related to her CF.
She takes more than 50 enzyme pills every day, which help her digest food. And four times a day, she lays on the floor, on her side, while her dad attempts to push out the mucus in her lungs. CF patients get lots of mucus deep inside their lungs – a dark place and a breeding ground for bacteria.
But Kayla doesn’t complain – ever. “I don’t see myself as any different,” she says. Self-pity is a concept foreign to her.
And Kayla’s father does his best to stay positive – for his daughter, but also for his own sanity. “If I was to sit back and dwell on my daughter dying, what quality of life would we have?” he says. “Instead, I have always made sure to give her good memories, and it is my belief that life is not about quantity, but quality.”
But what keeps Kayla most alive is her will to live. “I love my friends,” Kayla says. “When I am with them, I really don’t think about anything else.”
The Bowyers feel that they have come this far because of the support from family and friends. And her supporters believe that Kayla Bowyer is more than a kind, courageous young woman. “She is not one of us, she is an angel sent here to teach us the truth about life,” says Douglas Hamilton, a family friend and supporter.