Photo source: The Daily Telegraph
Cystic fibrosis is a genetic condition that afflicts individuals from birth. Over the years, the prognosis of the condition has gotten far better, but at one point in time, the disease was so devastating that individuals diagnosed at birth rarely lived past childhood. Such was the case for Cody Sheehan, who was diagnosed with cystic fibrosis at birth and not expected to survive past elementary school.
Cody learned at a young age that the condition is inherited, and that the condition arises as a result of a genetic mutation. He became fascinated with the idea of genetic mutation, turning his attention towards his superhero idols who were often also the result of a genetic mutation or abnormality. Rather than allowing himself to see his condition as a limiting factor, he began to identify with his heroes and focus on the ways in which his condition makes him unique.
As he grew older, he fought to beat the disease in any way that he could. He far outlived his expected prognosis. Now, at 28, he has taken it upon himself to be a hero to others like him, and to inspire youth to see themselves as strong, heroic individuals who can make the world a better place while fighting their own battles on a daily basis. Dressing up as his favorite childhood heroes, Cody declared war on cystic fibrosis. His journey has teamed him up with the prominent creators of the heroes that he embodies today.
A real-world X-Man
Cody Sheehan was born in New South Wales, Australia. When it was discovered that he had been born with cystic fibrosis, the outcome looked grim. His family remained strong and determined to find answers. Even though he did not grow up with access to top-of-the-line, cutting edge medical treatment centers, his father travelled a lot for business. So, Sheehan recalls that everywhere they went, they searched for answers and new solutions to Sheehan’s condition.
It was on one of these trips that Sheehan discovered that his condition was the result of a genetic mutation. By this time, he had already developed a love for all things superhero. His love for superhero icons like Captain America, Spiderman, and Wolverine seemed to evolve with his discovery that he too had a genetic mutation. He recalls that he “always loved the idea of there being someone who had something wrong with them, and then did something to themselves to become super.”
The story of Captain America resonated particularly strongly with Sheehan. Captain America, born Steve Rogers, was a frail and skinny teenager deemed too weak to join the military and fight the axis powers during World War II. He’s determined to join up anyway, and his persistence and grit earns him a spot in an experimental program designed to create super-soldiers. After taking a serum that changes his entire genetic makeup, he discovers that he has acquired superhuman strength, stamina, and agility, and he uses these abilities to fight and win the war for the United States.
As Sheehan grew up and navigated his own life of perceived weakness and frailty, he became able to characterize his own life as a personal battle against cystic fibrosis, thriving and living long past the age at which he was expected to die. As he grew older, and as his attempts to find a solution to his ailment continued, he began to take it upon himself to educate and inspire those around him to join the fight, and to fight for a cure. In order to this, he dressed himself in a hero’s costume, and took up the iconic shield of his childhood hero.
Becoming an Avenger
Before long, Sheehan was raising a considerable amount of money for charity. He inspired many children with cystic fibrosis to continue to fight the good fight as he had, and as they would have to for the rest of their lives. Though he was using the Captain America costume and his superhero alter ego for all the right reasons, he started to realize that he might be infringing on other powers—specifically, copyright laws and Marvel’s ownership of the Captain America brand.
Sheehan and his father decided to approach Marvel comics and send out a notice that they had been using the Captain America brand to promote cystic fibrosis awareness. While they were in no clear trouble, the move was an attempt to make sure that what Sheehan was doing was legally acceptable. The Sheehan family had a relative in New York who specialized in brand ownership and legal matters, and they asked him to reach out to Marvel.
The response from Marvel was far greater than anything Sheehan could have hoped for. Not only did Marvel fully support Sheehan’s fight to raise awareness for cystic fibrosis, but they also sent Sheehan Captain America merchandise to improve his costumes and help him further his mission. In a detailed letter to Sheehan and his family, Marvel praised Sheehan’s efforts and told him to continue to work towards increased awareness and a cure.
Persistence and advanced treatment
Sheehan’s personal battle with cystic fibrosis had left his lungs in disrepair, beyond healing and recuperation. He could hardly breathe, even on good days, and his treatments and therapies were failing to address the state of his lungs. The only hope for Sheehan to live past his twenties was for him to receive a lung transplant, which is currently considered one of the most effective long-term treatments for the disease.
Though he and his father tried to find a way to make the transplant possible, they struggled with the reality that Sheehan’s home town of New South Wales had only performed the surgery a total of three times prior. Though it was possible, Sheehan and his father were told that two hospitals would need to join forces to be able to properly carry out the procedure. Determined to go through with the surgery, Sheehan and his father convinced the hospitals to do it.
When Sheehan woke up from the surgery, he couldn’t tell if he had made the right decision or not. He said that “it felt like there was an elephant sitting on my chest. At that time, in the ICU, it seemed like the most horrible thing that I had experienced.” He still would not allow his condition to defeat him. After undergoing weeks of intensive physical therapy, he found himself running on a treadmill, breathing hard and fast, not coughing and not short of breath.
After receiving his new set of lungs, Sheehan decided to embark on another mission, this time to raise awareness of transplant surgeries and to continue to raise awareness of the disease at the international level. He remains inspired by Marvel comics and his childhood superheroes, quoting Iron Man by saying that “we can’t save all the CFs, but we can damn sure avenge them.” By continuing to raise awareness for the disease, Sheehan hopes that the fight may one day come to a close, and those born with cystic fibrosis may be cured of their genetic conditions to live normal, everyday lives.