Laura Jay-Ballinger and Her Family Push Forward in the Fight Against Cystic Fibrosis
Writer / Christy Heitger-Ewing
Photographer / Amy Payne
When Laura Jay-Ballinger was a little girl, her parents, Brenda and Jeff Jay, knew that something was wrong with their daughter, but a diagnosis didn’t come until she was 2 years old. As it turned out, Laura had cystic fibrosis (CF), a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
“We were told that life expectancy for her would be mid to late teens,” Brenda says. “We were devastated.”
As for Laura, she says she always knew she was different as a result of CF.
“It meant that I did breathing treatments that my friends didn’t,” she says. “It meant that when I had sleepovers, my friends’ parents recognized that I needed to swallow 10 pills before a meal. I also knew that there was a community full of generous people who were dedicated to raising money for CF.”
In 1989 the Jay family began participating in the Great Strides Walk for Cystic Fibrosis in Indianapolis, and as their numbers grew, they started a Great Strides Walk in Plainfield. The community responded, including businesses, schools, Scouts groups, the Kiwanis Club, the Plainfield Optimist Club, church groups and local ball teams. Laura herself became an advocate. She began giving speeches with the Cystic Fibrosis Foundation when she was 5 years old.
“Mom would help me write them and I’d memorize them,” Laura says.
She spoke about how donations would go towards raising money for medications that would help keep her alive, because at the time there was nothing on the market other than enzymes to help her digest her food.
Fundraising has served as a therapeutic outlet for the whole family. In 2000 Brenda joined the Indiana Chapter of the Cystic Fibrosis Foundation, where she served for 10 years. She continues to serve on several national foundation committees.
With CF, a lung infection can come out of nowhere.
“One day you’re fine, and the next day you can’t breathe and need IV antibiotics,” says Laura, who was frequently admitted to the hospital for lung infections, often spending two weeks there at a time. “I identified as the sick kid.”
Nonetheless, Laura kept living life as normally as possible.
“I went to school, played sports and had friends,” Laura says. “I did the things I wanted to do.”
She also did daily respiratory therapy, which involves pressure on the chest to move mucus through, to prevent infections. For the first 15 years of her life, Laura’s parents manually performed that therapy with their hands, pounding on her chest and back to release mucus. Then when she was in high school, a device came out that did that for her, bringing with it an independence that she didn’t previously have. She was able to go away to college, live in a dorm and play on the tennis team at Anderson University. She also earned a graduate degree in clinical psychology and married her husband, David Ballinger, in 2010. The couple then had to decide whether to start a family.
“I didn’t know any woman with CF who had carried a pregnancy,” Laura says. “It was a risky endeavor, and I’m not a risk taker.”
She was told that the majority of CF moms die before their child turns 10 – a chilling statistic. Nevertheless, with the support of her doctor, she took the risk and gave birth to a healthy baby girl named Ruby in 2013. Laura experienced a significant decline in her health after Ruby’s birth. Soon thereafter, three different drugs came onto the market in a row, all designed not just to treat the symptoms of CF, but also to actually correct the defect in the cells that cause CF.
“That’s a huge difference,” Laura says. “Instead of trying to keep up and prevent decline, they actually create healthy cells.”
One medication helped to stabilize her health, causing her to get sick less often, but it was not the miracle drug she was hoping for. But the science kept progressing, and in 2018 she felt she hit the lotto when she got a spot in a trial for a new drug called Trikafta. The timing couldn’t have been better. At the time she was in bad shape.
“Only my husband knew how sick I was,” says Laura, who was working as a psychotherapist at a community mental-health center at the time. “It was too scary for me to fully recognize it myself. When I couldn’t recover and had to quit my job, I was really scared. I thought that was the end of my career. I didn’t know what the rest of my life would look like.”
She was one of only 100 people in the world in the trial phase for her specific genetic mutation of CF.
“I took Trikafta the first day and that night I was reading ‘Harry Potter’ to my daughter, and I started to not feel well and was coughing a lot,” Laura says. “The next morning, things felt different.”
She started sleeping better after her sleep apnea treatment and thankfully she started coughing less, while also having more energy. The mucus in her lungs was coming up. Though it was a blind study, she knew she wasn’t on the placebo.
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“I knew something good was happening,” she says.
When she finally did see the numbers, her overall lung function had increased by a whopping 20%.
Kalydeco was approved in 2012 and helped just 4% of CF patients. Orkambi, approved in 2016, helped CF patients with the most common CF genes. Trikafta was approved in 2019 and is the most effective treatment available for 90% of patients.
“Throughout my life these drugs have been developed just as I needed them,” Laura says. “My health would be declining and I would need something new, and then something new would come to be. It’s been pretty wild but I’m so grateful.”
The first year after giving birth, Laura was on intravenous antibiotics four times, each time a three-week ordeal. Since she has started Trikafta, however, she’s not been on antibiotics once. She’s also back to work full time, running her own private psychotherapy practice.
“This work is super meaningful to me,” Laura says. “I’m beyond thankful and thrilled that this miracle came for me when I needed it to.”
Her primary concern has always been Ruby. “Now I don’t worry about making it to her 10th birthday like I used to,” says Laura, who is now 37.
The fundraising, however, continues. “There is still 10% of the CF population out there who are waiting and hopeful,” says Brenda, noting that in the first year of Great Strides fundraising, she and her sister-in-law Jill Jay raised $700.
“We were so proud,” Brenda says. “But what has transpired is beyond anything we ever dreamed of.”
To date, their family’s team, the JAYWALKERS, has raised just over $1 million, a bittersweet accomplishment as Jeff passed away in 2014 from a brain tumor. Still, they are proud and thankful, and know he would be too.
“We’ve been surrounded by the most caring, dedicated family, friends and community for over 30 years,” Brenda says. “The work isn’t done, but if anybody can do it, the CF Foundation can. I really believe that.”
The Indiana Chapter of the Cystic Fibrosis Foundation is located at 8445 Keystone Crossing, Suite 135 in Indianapolis. For more information, call 317-202-9210 or visit cff.org.