Based on a True Story
Librettist and lyricist Nicole Kohr was born in New Jersey in 1992. She was raised by her mom, Patty, her grandparents, and her uncle. Despite being very sick since birth, Nicole was not diagnosed with cystic fibrosis (CF) until age five, at which time she weighed a mere 25 pounds. Nicole’s mother, Patty, spent years begging doctors to take a closer look at her daughter’s symptoms, but most chalked it up to new mother syndrome. Nicole was finally diagnosed by a pediatrician at RWJ University Hospital. The doctor asked Patty to lick Nicole’s forehead and confirm Nicole was salty. The “lick diagnosis” was validated by an overwhelmingly positive sweat test.
Nicole’s first hospital stay, or “tune up,” began a few days after her diagnosis. Only two medications were available for CF patients at the time, and each tune up lasted several weeks. Nicole would spend her time watching Shirley Temple videos with her mom, crafting with child life specialists, and writing songs. With a lack of medicine and five years of lung damage, Nicole was told that she would not live to be 10-years-old. With the encouragement of her mother, Nicole never accepted this expiration date.
Instead, Nicole went on to thrive in several programs including George Street Playhouse Theater Arts Program, Villagers Theatre Summer Intensive, Broadway Dance Center, and several acting intensives. Nicole loved the stage and was particularly smitten with a children’s theater program called “My Name is Matthew“, a show for an audience of disabled children. She even received an NJACT Perry Award Nomination for Best Supporting Actress. Identifying first and foremost as a performer, Nicole asked her mother to keep her disease a secret.
When Nicole wasn’t acting or stubbornly pursuing a straight-A career in school, she was performing for the hospital staff. Time between hospital stays grew shorter, so Nicole was in the hospital more often than not. She also had a lot of time to write. Nicole’s playwrighting debuts ranged from D.A.R.E. plays in elementary school to camp-wide productions.
During Nicole’s junior year, Patty and Nicole received a phone call that Nicole was growing mycobacterium abscessus, one of the deadliest CF infections. Nicole was advised by her care team to take the semester off. Instead, Nicole self-administered several IV’s for seven months, and finished at the top of her class. She also completed her certification in the Theory and Practice of Child Life. Fresh out of college, Nicole accepted a job at Princeton Theological Seminary as a development associate. She worked there for three years before going disability. Nicole simultaneously founded Colie Creations, which allowed her to write and self-publish children’s books. It was the first time that she revealed to an audience that she had CF.
Nicole was eligible for transplant due to “complete antibiotic resistance” and “end stage CF.” In a last stitch effort to share her work with the world, Nicole wrote an email to the Cystic Fibrosis Foundation (CFF), sharing a few of the lyrics that had been collecting dust on her computer. She explained that only a handful of people knew that she had CF, so it was a long shot that anyone would take interest. On May 31, 2019, Nicole received a $10,000 grant to produce her original musical, “Fall Risk.” The next day, Nicole married Jared Kohr. Nicole’s lungs were functioning at 11% and she weighed all of 79 pounds. Patty and Nicole’s oxygen tank, 02D2, never left her side.
On June 14, 2019, thirteen days after her wedding, Nicole received her bilateral lung transplant. Despite several post-surgery complications, Nicole took her first steps just three days after her surgery. Patty documented all of this on social media @psigur. She was discharged to outpatient rehab on July 4, 2019, and graduated from PT on July 17, 2019.
The first “Fall Risk” branding photos were taken at the Gift of Life Family House where Nicole, Patty, and Jared temporarily resided. Nicole’s picture is now on the Gift of Life Family House.
Nicole was overwhelmed by the outpouring of love that she received from social media, and it inspired a new journey of transparency. Nicole Kohr, now an award-winning author, is a proud advocate for the cystic fibrosis and #donatelife communities. All her her creative works including books and blog can be found here. Nicole was promoted to Volunteer Engagement Chair at the Eastern Carolina’s Chapter of the CyFF, and speaks directly to government officials about antibiotic resistance. Most importantly, she and the “Fall Risk” team are moving the show from script to stage.
