This 28-year-old Australian woman didn’t think she’d live for long after tying the knot with her teenage sweetheart. But in an astonishing twist of fate, the marriage ended up saving her life.
Jessica Bean tried to have as normal a childhood as possible in Australia’s remote island state of Tasmania, located 150 miles off the country’s southern coast. But she was living with a potentially deadly illness that she and her family hoped would never become a life-threatening problem.
By 16 years old, however, it became apparent that her illness would come to define her life: Bean was battling cystic fibrosis (CF), an incurable genetic disorder characterized by the loss of lung function and other symptoms. Most sufferers living with CF only reach the age of 37.
And although Bean had found happiness with her boyfriend Cameron, by the time she turned 20 her health had gotten much worse. As she recalled on her website, “I was no longer able to participate in the myriad of co-curricular activities that I felt defined who I was. I suddenly went from one that devoted her life to making a difference to others to someone who had to devote her life to herself.”
And while she managed to get through a tough year with the help of painkillers, her health wasn’t getting any better. Not long after turning 21, then, she had her first major wake-up call: the doctor told her she had to start thinking about getting a lung transplant.
Shocked by the news, Bean and her boyfriend decided to go on a three-week getaway to Queensland – Australia’s third-most populous state, located on the country’s northeastern coast. Famous for its beautiful beaches, reefs and national parks, it was the ideal place to recoup and think about the future.
A day before they were to return home, however, Bean fell critically ill. She was rushed to the hospital, where the doctors discovered that she had swine flu and that her lungs were functioning at only 30 percent capacity. As she later recounted on her site, “Had it not been for having access to the highly experienced medical team, I wouldn’t have survived. My doctors to this day remind me how lucky I was.”
Bean spent the next two weeks at the hospital and, while she was now well enough to return to Tasmania, began to seriously consider the thought of relocating to Queensland. This decision was sealed when she found out that her favorite doctor was also moving there.
The next four years were difficult: Bean’s life shifted from one focused on college and work to breathing treatments and hospitals, and it was a struggle to just get through the day. To make matters worse, her relationship with Cameron “was drifting from a romantic one, to one of a patient and caregiver.”
But the couple were determined to make the most of their lives and planned to marry in February 2013. Indeed, in the year leading up to the marriage, a glimmer of hope appeared. The couple found out about a new clinical trial for Orkambi – a promising new cystic fibrosis medication – and, as luck would have it, Bean’s hospital was one of a few chosen to be included in the trial.
Despite the good news, Bean’s hopes were crushed when she received a phone call from the doctor saying that her health was not stable enough to be considered for the trial. “I was shattered. Beyond shattered, whatever that is,” she wrote on her website.
But her boyfriend and soon-to-be husband would not let her give up. In fact, the couple immediately set out a plan to improve the 24-year-old’s health so that she could be admitted into the potentially life-saving trial. This meant facing her fears of needles and starting to take insulin to control her blood sugar levels.
Unfortunately, Bean’s health continued deteriorating as the day of the wedding approached – so much so that she spent half of the nine months leading up to the big day in the hospital. She would even sneak out for wedding dress fittings while still having a medical tube attached to her arm.
Despite all of this, she was determined to have the perfect wedding for Cameron to remember, even if there was a real chance that she wouldn’t be a part of his life for much longer. And the day of the ceremony went exactly as Bean had planned: the teenage sweethearts tied the knot surrounded by family and friends, with every happy moment captured by a photographer.
However, Bean’s condition meant that the newlywed was soon after and once again admitted to the hospital. Even if her doctors dare not say a word, Bean could tell she was getting worse from their changed demeanors and the tests they were ordering her to take.
After months at the hospital, though, Bean managed to slowly stabilize her health again, bringing her lung function up to 41 percent. This time around, she was more determined than ever to stay well so that she could qualify for the trial. As she recalled, “Allowing my husband to plan my funeral in the same year we had been married wasn’t an option I was prepared to consider, I couldn’t do that to him.”
It was during this time that the couple got in touch with their wedding photographer’s husband, who was a surgeon by trade. While they didn’t know it at the time, it was this miraculous meeting that would change Bean’s life forever.
What he suggested, based on his own personal experience and research, was eliminating all sugar from Bean’s diet. Desperate for any way to improve her health, both she and Cameron – always supporting the love of his life in whatever way he could – agreed to follow a strict sugar-free diet plan.
Miraculously enough, her lung function improved and remained stable for several months, allowing her to finally participate in the clinical trial. And once she was given the groundbreaking medication, the effect was almost instant – her energy improved greatly, and she no longer experienced debilitating symptoms such as coughing fits in the morning.
Since starting on the medication in 2013, then, Jessica Bean has said that, happily, her life has begun anew. Today, she works as a health coach and motivational speaker, seeking to help and inspire other young women going through chronic illness. She still has to take a variety of medications and lead a rigorous lifestyle in terms of both exercise and diet – but for the first time in her adult life, her condition is no longer hanging over her like a dark cloud.