Daniel Cressy has suffered from symptoms of the painful genetic condition since birth
Credit: Governor Jeff Landry
NEED TO KNOW
- After struggling with sickle cell disease his entire life, Daniel Cressy is functionally cured following Casgevy gene therapy
- Cressy told PEOPLE the groundbreaking treatment gave him a “second life” after years of painful hospitalizations
- Now, the 23-year-old aspiring pilot is using his story and nonprofit to raise awareness of sickle cell disease
A Louisiana man who spent his life struggling with sickle cell disease is now the first person in the state to be declared functionally cured through gene therapy.
On Monday, June 22, Daniel Cressy rang the bell at Manning Family Children's Hospital in New Orleans alongside his family, friends, hospital leaders and elected officials — including Louisiana Gov. Jeff Landry — to mark the end of his treatment journey.
For Cressy, 23, the road to that moment began almost as soon as he was born.
Credit: Governor Jeff Landry
"I was diagnosed as an infant and my parents noticed symptoms when I was just a toddler when I would cry nonstop, without relief," he tells PEOPLE exclusively. "So they would be forced to take me to the hospital and I would usually stay for at least a few nights at a time."
His symptoms included fevers, severe pain in his chest and abdomen and "crying … lots of it."
Growing up, Cressy says he was hospitalized between six and 12 times each year because of complications from the inherited blood disorder.
The disease was especially severe throughout his childhood and early teenage years before becoming more manageable during high school.
Credit: Governor Jeff Landry
"My symptoms were at [their] worst when I was a young child to early teen," he explains.
"As I got older, it got better. And at some point, I actually stopped having crises for four years straight. I was able to manage my disease much better when I got to 10th/11th grade. I ate more healthily, and that helped a lot."
Still, sickle cell disease affected nearly every aspect of his life.
"Physically, I would get tired and winded very easily," Cressy says. "I couldn't play on cardio intensive sports teams and sometimes I would get upset because I just wanted to have fun like all the other kids."
Mentally, however, he says the experience ultimately made him more resilient.
"I came to terms with the fact that I will have to live life a bit more proactive than others," Cressy says. "It actually made me stronger."
When the U.S. Food and Drug Administration approved a gene therapy called Casgevy for sickle cell disease, Cressy saw the possibility of finally living without the constant threat of painful crises.
But getting access to the treatment proved difficult.
Because the therapy was both new and costly, Cressy, who is a truck driver and aspiring pilot, says securing insurance approval required months of additional review.
"I wasn't denied gene therapy … I just had to go through extra hoops because it was new and expensive," he says. "Trying to navigate approval took a lot out of me, but my friends who are flying jets and fighting sickle cell all kept me going. The team at Manning Family is amazing too."
Credit: Governor Jeff Landry
Hospital officials spent months working with his insurance provider before approval was granted.
Now, more than two years later, he says he feels like he has a second chance.
"I am great internally," Cressy says. "I am physically fit as well. My hemoglobin is over 16. But externally I still am recovering. Like I am still bald."
The milestone also brings him one step closer to achieving another lifelong dream: flying planes.
"I realized I love challenges and also operating complex equipment," he says. "I also knew that my career would be something I have to commit to for the rest of my life, so I may as well pick something I'd enjoy doing. A pilot is the perfect career for someone with my ambition."
He says he now hopes others facing similar diagnoses remain persistent.
"I suggest they keep at it and be very persistent on making sure your care team understands how much the treatment means to you," Cressy tells PEOPLE. "This therapy is worth it because your second life, Life 2, will be amazing."
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Cressy has additionally established the nonprofit, Privileged Pilots Project, an organization dedicated to helping aspiring pilots with health and life challenges achieve their dreams.
"We are dedicated to using our nonprofit and our stories to inspire and give back to the community so that everyone not only knows about sickle cell, but also so that others may be able to come out on the other side of the treatment," he says.
He says the organization is also working toward making Casgevy accessible to everyone with sickle cell disease, regardless of income.
“[There are] very tight rules [to qualify for treatment], but we are working to make this less strict. We wanted this to be something that anyone with social security can qualify for, not just the 1%,” Cressy says.
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