Kansas teen who fought cystic fibrosis dies while waiting for a third set of lungs

Update, Dec. 16: Madison Taliaferro died while waiting for a double-lung transplant on Saturday evening, her family said, according to WIBW.

Original story

Madison Taliaferro is fighting for a “third chance at life” — and a third set of lungs — while her body is rejecting the double-lung transplant she got six years ago, her mom said on Facebook.

Madison, 18, is a high school senior in Holton, Kansas, who was born with cystic fibrosis, her family wrote on a GoFundMe website. That’s a genetic disease that “causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs,” according to the Cystic Fibrosis Foundation. It leads to “extensive lung damage, and eventually, respiratory failure.”

Her quality of life really started to decline in 2012, the Topeka Capital-Journal reported at the time, and she was placed on a pediatric transplant list.

At just 12 years old, Madison underwent the double lung transplant and knew she would have to take medicine to fight against organ rejection “for the rest of her life,” the newspaper reported.

Unfortunately, her body is now rejecting that second pair of lungs, the Holton Recorder reported.

“The doctors aren’t sure what caused the chronic rejection to occur, but one minute she was enjoying her homecoming dance and the next week she was fighting for her life,” the GoFundMe states. Her lung function declined from 48 percent to 22.5 percent, according to the family.

Madison had a choice to make, her family wrote last week, and both options are “fairly scary.”

“The first was to try and make her as comfortable as possible at home for as long as she has left and the second was for her to be listed for a second double lung transplant knowing the risks for a second transplant are so much higher than the first time around,” the GoFundMe says.

Madison “isn’t done fighting and isn’t done making memories,” so she chose the latter, according to her family.

“She wants to go to her senior prom and graduate with her classmates,” the GoFundMe states. “She wants to get her first job and hate working it. She would love to be able to go to college and learn phlebotomy.”

That’s why Madison “is not at all ready to throw in the towel,” mother Desiree Razak-Taliaferro posted to Facebook. So, they requested to be put on the transplant list on Nov. 28.

The next day, Razak-Taliaferro got an email — her daughter was officially on the transplant list in hopes of a third set of lungs, according to a Facebook post.

“None of us know when her third chance at life will come with the call. It could be tomorrow. It could be a month from now or longer, but she is going to push and fight through the pain so she can get back to living her best life,” her mom said on Facebook.

The Taliaferro family is raising money for medical expenses through the GoFundMe and a bank account, WIBW in Topeka reported. The GoFundMe, which had a $10,000 goal, had raised $21,000 as of Thursday afternoon.

Those who wish to donate through the bank can send checks made out to “The Benefit of Madison Taliaferro” to Denison State Bank, 421 New York Ave. in Holton, according to the station.

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