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St. Charles Girl Helped Raise Awareness of Cystic Fibrosis

Now McAlister's Deli is participating in a fundraising event for the Cystic Fibrosis Foundation in Kayla Thornton's honor.

Like most 12-year-olds, Kayla Thornton no doubt knew the abbreviations that go with cyber-language--BFF, CUL8R and LOL.

She also knew another abbreviation, one that many people aren't familiar with: CF. Cystic fibrosis, or CF, is the genetic disease that attacked Kayla's body her entire life.

But the St. Charles girl preferred another meaning for the letters CF: cure found. In fact, a trivia night fund raiser in April was called “Kayla's Wish: Cure Found.”

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In May, while Kayla was being treated in Cardinal Glennon Children's Medical Center Kayla's mother, Maggie Thornton, learned a radio interview she and Kayla had taped had aired. 

The station, 93.7 the Bull, created an audio montage of their comments and set them to a Rascal Flatts song and played that day during the Children's Miracle Network Radiothon.

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Maggie Thornton said when she called the station, she learned the interviewers, Mason and Remy, were broadcasting that day from the hospital lobby.

The two hosts invited Kayla and Maggie to come down and update them on Kayla's drug treatment. In a live interview that day, Maggie explained that the drug caused Kayla to lose some of her hearing, and doctors were considering putting tubes in her ears to prevent the loss from getting worse. Kayla, who came to the interview in a wheel chair, said she was in constant pain.

Just four days later Kayla suddenly and unexpectedly passed away.

It had been a long, hard fight--one that she never complained about--since she was diagnosed in 2006 at age 8, Maggie said.

An Inspiration

As a baby, Kayla had frequent bouts of pneumonia and sinus problems but none of the pancreas issues often seen with CF. Doctors mostly wrote her problems off to asthma. 

When she was born in 1998, the screening for CF in newborns now done routinely in Missouri was not yet available. Kayla had been tested for CF several times.

“It was never negative and it was never positive,” Maggie said.

But at age 8, when she was having trouble breathing, the emergency room radiologist who read her chest x-ray asked if she had been tested for CF.

“He said her lungs looked like those of someone with CF,” Maggie said.

A new genetic test, which had not been available earlier, confirmed Kayla had CF. 

In January 2008 Kayla developed a bacterial infection in her lungs that could not be eradicated.

“She had a constant struggle from then until the time she passed away. They just couldn't get rid of it, and eventually it won,” her mother said.

From the time she was diagnosed until February of this year, Kayla had been in the hospital 223 days, Maggie said.

“She was hooked up (to antibiotics) sometimes for four hours a day,” Maggie Thornton said.

As happens sometimes with long-term treatment, the antibiotic quit working forcing doctors to try another.

Eventually, “there wasn't anything left to treat that bacterial infection with,” she said.

On May 5 when Kayla complained of not feeling well and asked to go to the hospital, Maggie debated whether they should go to the ER. After all, Kayla had an appointment on May 9, the day after Mother's Day.

She also remembers a doctor asking if the family wanted Kayla to participate in a study in Maryland. The doctor told the family not to expect a miracle if they did go.

“I said, 'If we would go, the worst news they could tell us is she has six months to live,'” Maggie said. “And then she was gone like 10 days later. When she went in the hospital nobody had any idea that it was going to end the way it did.”

In fact, doctors said if a lung function test they planned to do on the following Tuesday was good, they would send her home for the weekend, she said.

But about 2 a.m. Wednesday, Kayla developed a fever. “She just went down from there,” Maggie said. “We had no idea it was going to happen the way it did.”

Besides her mother, Kayla is survived by her father Chris and brother Blake, 17.

“Everybody who knew Kayla knew Kayla for her smile,” her mother said. “Kayla never ever complained outside of her home about what she had to go through. Any person you would talk to about Kayla talked about her smile. And she didn't care how she was feeling, she always wanted to do something for somebody else.”

Raising Money in Kayla's Honor

Now, “Kayla's Wish: CF Cure Found” has become the mantra of the girl's family and friends as they continue raising funds for the Cystic Fibrosis Foundation in her memory.

Just a week after her passing, Kayla's family and friends participated in the Great Strides walk for CF in St. Peters. The walk raised more than $20,000 beyond its goal.

“That's what she wanted to do,” Maggie Thornton said. “Last year she was in the hospital, they wouldn't let her leave the hospital to do the walk.”

Christie Derbin, executive director of Gateway Chapter of the CF Foundation, said the walk raised $91,000, far more than its $70,000 goal.

“We really surpassed our goal and a lot of it was due to Kayla,” she said.

Facebook Contest To Raise Funds 

Now Kayla's family and friends are hoping to get others to help them raise funds for the Cystic Fibrosis Foundation by voting in Tea Town USA, a Facebook-based competition sponsored by McAlister's Deli, Nicci Lowrey, Kayla's cousin and godmother, said. Lowrey, 28, is a catering manager for McAlister's Deli in Creve Coeur.

People can vote online once a day through July 28, she said.

Towns can earn extra points when customers check in on a mobile ap and through other challenges. On July 28 McAlister's will hold a national free tea day competition. The McAlister's that gives away the most tea that day gets extra points, Lowrey said.

At the contest's end, the town with the most votes will get $7,500 for the charity of its choice, the second place winner will get $5,000 and places 3 through 5 get $2,000 with the next five places getting $1,000 each.

Lowrey said McAlister's is asking customers of St. Louis area stores to vote for St. Louis, not individual stores (like Creve Coeur or St. Charles) “because that's essentially competing against ourselves.”

McMO Management, LLC owns all seven area McAlister's Deli locations which selected the Cystic Fibrosis Foundation for the promotion.

“They did so to honor Kayla's fight against CF and to help bring us closer to having CF stand for Cure Found,” Lowrey said.  
 

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