K.C. White knows she’s beating the odds living with cystic fibrosis.
After being diagnosed at age 3-and-a-half, she and her family were told that she might not live to graduate high school.
Now at 36 years old, White is aware that the latest data on life expectancy for those with cystic fibrosis – somewhere in the early 40s – will always be on her mind. Yet she continues to look to one of the most important reasons to fight every day: her 8-year-old son, Mac.
“Sometimes Mac definitely worries about me, but he also has been to some CF events and he knows that there are so many people fighting the disease with me,” she said. “He believes that his Mom is going to be by his side for many years to come.”
White says she returns to her hometown of Buffalo each year – she lives in Chagrin Falls outside of Cleveland – for the annual Basseye tournament to help raise awareness and funds in hopes of one day catching a cure for the disease.
She joined 150 anglers and charter boat captains Friday on Lake Erie for the 14th Annual Greater Niagara Basseye Celebrity Challenge, sponsored by the local chapter of the Cystic Fibrosis Foundation.
Each boat had two or three passengers, in addition to a professional fishing guide who helped the anglers reel in as many combinations of bass and walleye as possible – hence the tournament name.
One of the event sponsors, Robert Rich Jr. of Rich Products Corp., is an avid fisherman who supports the foundation. He met White’s dad by chance, heard her story and wondered what one person could do to help.
And that is how Rich and his wife, Mindy, started the tournament 14 years ago. The event is modeled after the Redbone Tournament Series founded in Florida in 1988 to raise funds for cystic fibrosis research.
Cystic Fibrosis is a genetic disease that affects the entire body, but largely impacts the lungs and digestive system. The life expectancy has nearly doubled in the last several decades because of increased fundraising and research.
“I have so much faith… The life expectancy has more than doubled in my lifetime,” White said by phone as she prepared to return to Buffalo.
She starts each day with treatments through a nebulizer and nine different medications. Following the treatments, she watches her calorie intake to make sure she takes in as much has she can to sustain herself for the day, and then works out.
She enjoys biking, swimming, running and cross-fit training. Once the day is done and her husband, Justin, and Mac are home, White has an additional treatment cycle to complete.
She also serves on the national board for the Cystic Fibrosis Foundation, alongside two of her best friends. Her father previously served on the board of the Western New York chapter, and was closely involved in the planning of local events.
The tournament, and a dinner with silent and live auctions in Rich’s Renaissance Atrium will raise about $150,000, part of about $1.2 million the foundation expects to raise this year. The foundation gets no government funding and exists solely on donations. All of the charter captains donate their time for the tournament.
“Events like this raise money to buy the science, and science saves lives,” said Gia Coone, executive director of the Western New York Chapter of the Cystic Fibrosis Foundation.
White was crowned the grand champion female angler in 2010 but said all of the credit should go to Barry Schultz, her boat guide and now close friend. Each time she reels in a bass or walleye, she relies on Schultz to handle the fish and bait.
Schultz has fished nearly his entire life. The 51-year-old began guiding in 2000 when he got his captain’s license.
“We’ve had such a good chance to get to know each other, we’ve created a real friendship over the years,” she said.
Schultz said he has never met anyone as positive about life as White.
“If (K.C.) wasn’t coming back every year, I would probably not do this anymore,” he said. “You can’t not like her and be happy around her. She’s just a great person.”