Healthy Living

A Cystic Fibrosis Love Story

A Cystic Fibrosis Love Story

Photo credit: CNN

John Green’s The Fault In Our Stars took the world by storm years ago, and readers across the globe fell in love with the couple. However, many were even more enamored with Dalton and Katie Prager - dubbed the "real life Fault in Our Stars couple."

A beautiful love story

Katie and Dalton initially met when they were both 18 years old, on Facebook. It began by Katie seeing a picture that Dalton's mother had posted of him in the hospital, and she felt as if she needed to support him. She commented, "if you ever need a friend to talk to, you can reach out to me." He was a bit confused, and wrote back, "sorry, but do I know you?" She told him that he didn't, but she offered him a bit of information about herself, along with encouraging messages like, "my breathing is pretty crappy and I see you are in the hospital. I'm sorry. I know it sucks! But you just gotta stay strong."

From that time on, they never stopped supporting each other. They continued to send messages back and forth, sharing their experiences with cystic fibrosis but also with life in general, and eventually they gave in to the fact that they were falling in love. Katie recalls a conversation with her mother: "Let's just say that after three days of talking to Dalton on the phone, I called my mom and told her that I knew who I was going to marry."

Katie wasn't alone. Dalton's mom Renee remembers how much her son's demeanor had changed because of Katie: "He was like a new person. Before, he just saw 'my life is going to end,' and he just knew that. But all of a sudden he wanted to do things, he wanted to go places. He could see things he never saw before. He saw a future. He saw happiness."

A barrier to meeting in person

Katie clearly became a source of inspiration, hope, and love to Dalton and they wanted to meet in person as soon as they could. However, there was a major barrier. Those with cystic fibrosis are at a high risk of cross-contamination, so Katie's doctor recommended that she not meet him in person - especially because Dalton had an infection called Burkholderia cepacia, which can be fatal. However, Katie knew that she needed to meet him, and defied her doctor's orders.

She recalled when she first saw him; she says he was leaning against a brick wall, looking cool and handsome wearing sunglasses. She recalls, "my heart was racing, but I just went right up to him and hugged and kissed him on the mouth without even saying hello. I'm usually not that kind of girl, but it just felt so right."

Their first date was amazing by all standards; they rode roller coasters at Kings Island amusement park, which is in Ohio. Dalton offered Katie a necklace as a present for her 19th birthday, which had taken place just a couple days prior.

Their relationship continued at a fast pace, with a stunning proposal on their trip to St. Thomas with his grandparents, and their marriage taking place less than two years after they met. While they both had their infections, they remained healthy, for the most part, for the next few years. They lived in Flemingsburg, where they had game nights with their most beloved friends and family.

Katie referred to how much she loved that time: "We did stuff; we had fun. It was like something out of a fairy tale."

Two lung transplants

In 2014, they joined the waitlist for lung transplants at the University of Pittsburgh Medical Center. Dalton had his transplant first, followed by Katie's. They had to battle with Medicare and Medicaid in order to afford the procedures, but eventually were successful.

However, this was not the end of their health struggles. Initially, the response to the transplant seemed to be positive but Dalton soon after developed lymphoma. He was able to overcome the cancer, but then had to be hospitalized due to pneumonia and a viral infection.

Unfortunately, Katie's transplant proved to be problematic from the start, and was constantly in and out of the hospital as a result. The doctors essentially told her that they could not help her situation, so she was able to enter hospice care in Kentucky, where she was from.

The plan was for Dalton to fly from Missouri to Kentucky so they would be able to spend some of Katie's last days together - but Dalton never recovered enough to make the trip. He passed away in a hospital in St. Louis. While she couldn't be there in person, Katie was there over FaceTime to give him her love the whole time.

Despite this major heartbreak, Katie said she would not have done a single thing differently. She was so happy that she made the decision to meet him, and loved even the hardest parts of their ordeals, whether it was being sick in the hospital or spending time together anywhere else. She explained, "It gave me some of the best years of my life. I'd rather have five years being in love and just really completely happy than 20 years of not having anybody. I think that if we had gotten the chance to write a book that it would have been a bestseller."

Of course, she referenced the most fitting ending for the both of them: "And they lived happily ever after, in each other's arms for eternity."

Happily ever after

After Dalton succumbed to cystic fibrosis, Katie wrote on her Facebook profile, "Dalton fought a long hard battle with cystic fibrosis. He was a courageous fighter and 'give up' wasn't in his vocabulary." The same exact thing could be said of her.

However, the two love-birds were not destined to be apart for too long. Katie passed only a few days later. Her mother explained how it happened, also in a Facebook post, "early this morning, she gained her wish of being at home, in her bed, surrounded by her mom, dad, brother and her dogs, dying peacefully, away from the hospital, tubes, IVs. The days to follow will not be easy but I find comfort in knowing that my girl lived, she really lived."

She continued, "One important thing I have taken away from this is to live, just live ... if there is something you want to do, don't wait. Life is short, love as hard as you can. Katie knew how much she was loved. She knew how much I loved her, I told her and showed her every day. We were given a great gift, we knew her time was short and she was able to do a few things that she wanted, and I am grateful for that."

For many with cystic fibrosis, this story is an inspiration, not only on a romantic level - but on a life level. Dalton and Katie Prager showed that you could not let a diagnosis define you - that you had to fight back, and live the life you want, no matter how difficult, or even sometimes dangerous, it might be.