Jourdan Sibley has turned her cystic fibrosis journey from a negative aspect in her life into a positive opportunity to transform the lives of others through her Jourdan’s Journey Cystic Fibrosis Organization.
Sibley’s parents found out shortly after their little girl was born that she was among 30,000 individuals in the United States to suffer from cystic fibrosis. This genetic disease causes significant, recurring lung infections and difficulty breathing on a day to day basis.
Jourdan’s mom Toni Barilleaux said that she never imagined her sweet, innocent babygirl would have to endure the rigorous therapies and surgeries that she has throughout her life.
“It’s crazy because when they told me Jourdan had cystic fibrosis I was upset, but I figured they would just give her some medicine, maybe an inhaler, and we would move on with our lives. I quickly realized that my understanding of this disease completely underestimated the future that laid before my daughter and for our family,” Barilleaux said.
Throughout her childhood, all Jourdan wanted was to live a normal, typical life where she could play sports, run, or simply be an ordinary child without having to worry about her scars, running out of breath, or having to watch from the sidelines simply because her body would not let her live the life that she so desperately wanted.
Sibley said, “It is amazing how having an invisible disease can intensely impact your day to day interactions. I remember kids on the playground used to try to get me to play tag with them and they just couldn’t understand that I was not physically able to. In their eyes I was just Jourdan. In all reality, I was being held hostage by my cystic fibrosis.”
When Jourdan entered high school, her disease took a turn for the worst. The countless medication that caused severe swelling and water retainment, breathing treatments, and surgeries simply were not enough to contain the cystic fibrosis anymore.
In 2013, Jourdan’s doctors at Tulane Medical explained that in order for Jourdan to survive, she would need to be put on the transplant list to hopefully receive a double lung transplant.
“I just remember being in shock when I heard the words come out of her doctor’s mouth. We knew this day was getting close, but to know that my child’s life was soon to be on a time clock was just unfathomable,” Barilleaux said.
Jourdan was forced into homeschooling because the countless doctors appointments and a portable oxygen tank made being in normal classroom setting extremely difficult.
“Every time I think about my homeschooling days I get emotional. Those were the most difficult months of my life. I missed my friends terribly and I wanted to be on the cheer squad so badly, but I had to quit. It was the worst time of my life,” Sibley said.
On February 14, 2015, Jourdan received a phone call that they had found a set of lungs that they thought would be a good match for her. The family loaded up their van and headed to New Orleans to hopefully get Jourdan on the road to breathing easy.
After admitting Jourdan to a room and prepping her for surgery, the doctors notified her that the lungs were not viable, so she would have to leave and continue being on the waiting list.
“We knew the chance of that happening was great, but I guess we were just a little too hopeful so being let down was extra difficult. I remember Jourdan just crying and crying for this to all be over with. She was tired of being let down and so were we, Barilleaux said.
March 4, 2015 proved to be the beginning of a new era as Jourdan received another call from Tulane Medical saying that there was a pair of lungs waiting for her.
The family went to New Orleans, got Jourdan prepped for surgery and awaited 11:30 p.m. when her transplant would officially begin.
Jourdan’s best friend Sydney McCreary said she remember that night so clearly as she worried and prayed for the protection of Jourdan and for success in the operating room.
“The last thing Jourdan told me was that she was not scared. That whatever happened to her that night would ultimately relieve her from her pain. I did not want to her my best friend talk about death over healing, but I knew deep down that Jourdan just wanted to be at peace and breathing easy, no matter the cost,” McCreary said.
Breathing easy is exactly what Jourdan got from the rigorous overnight surgery. Over the next few days in recovery, Jourdan was able to take off the oxygen mask she had been wearing for almost a year and a half, which made her happier than anything.
Jourdan said, “I hated wearing the oxygen mask. Not only was it aggravating, but it was a constant physical reminder that I’m sick. All I wanted was to not have to look my disease in the face everyday.”
After multiple weeks in the hospital and being monitored, Jourdan was able to leave the hospital with her lungs functioning at an impressive 95%. Considering Jourdan went into her transplant at 20% proper lung function, doctors and her family view this as a tremendous success.
Jourdan’s transplant provided her the opportunity to accomplish feats she never thought would be possible. She was able to cheer at her high school for her senior year, became a certified phlebotomist, made homecoming court, and in 2016 she became a high school graduate.
Her family is thankful for the progress she has made and for the extra time they are getting to spend with Jourdan. As an expression for their gratitude, the family and friends created “Jourdan’s Journey Cystic Fibrosis Organization”.
Through “Jourdan’s Journey”, money is raised by hosting “The Great Character Chase” 5K run in Livingston, participating in the Cystic Fibrosis Walk at LSU annually, and selling “Jourdan’s Journey” t-shirts.
All of the proceeds that are raised are then sent to the national Cystic Fibrosis Foundation which raises funds to raise awareness, find better treatments for patients and ultimately find a cure for this genetic disease that impacts 1 out of every 3,000 families.
“I hope that my experience with cystic fibrosis gives strength to other patients to keep fighting and that every dollar we raise can one day help us all beat this disease. Hopefully one day we will not be a statistic,” Jourdan said.