This 23-Year-Old Was Hospitalized Up to 12 Times a Year. Now He’s the First Person in Louisiana Cured of Sickle Cell Disease: ‘This Is My Second Life’

Imagine spending a childhood being hospitalized between six and 12 times a year, every year. This was the reality for now 23-year-old Daniel Cressy, who was born with sickle cell disease.

The disease led him to have significant symptoms, including severe abdominal and chest pain, as well as fevers. Additionally, Cressy had a difficult time running around with other kids or playing sports because sickle cell disease led him to become easily fatigued. And as he got older, it seemed as if the blood disorder might take away his dream of becoming a pilot.

However, Cressy is now the first person in the state of Louisiana to be declared functionally cured of sickle cell disease after two years of gene therapy.

What Is Sickle Cell Disease?

Sickle cell disease is an inherited blood disorder affecting hemoglobin, the element responsible for transporting oxygen within red blood cells.

While red blood cells are typically flexible and disc-shaped to allow them to move easily where they should, in sickle cell disease, they are more sickle or crescent-shaped. This shape doesn’t move nearly as smoothly as disc-shaped cells do, which can lead to blockages in blood flow to the body.

This blocked blood flow can lead to pain crises, where the affected individual is hit with a sudden bout of extreme pain, as with Cressy’s abdominal and chest pain. Sickle cell disease can also cause other significant health issues, including infections, kidney disease, problems with the lungs, and stroke.

Daniel Cressy’s Gene Therapy Journey

When the U.S. Food and Drug Administration approved a gene therapy for sickle cell disease called Casgevy in 2023, Cressy knew he wanted the treatment. However, it wasn’t so simple to receive it.

For starters, the new gene therapy was costly, so it took months of review to obtain the insurance approval needed for treatment. As he explained in an interview with People magazine, “I wasn’t denied gene therapy … I just had to go through extra hoops because it was new and expensive.”

Casgevy works by editing a person’s own blood stem cells to increase the production of hemoglobin F. Hemoglobin F not only increases the overall level of hemoglobin in red blood cells but has also been shown to improve the cells’ function.

Though the entire treatment took two years, Cressy is now functionally cured and feeling pretty amazing. Plus, his dream of becoming a pilot is a step closer, and he’s been given a second chance at life.

Cressy told People, “This therapy is worth it because your second life, Life 2, will be amazing.”

Cressy also wanted to help others, so he’s already started the non-profit Privileged Pilots Project to aid potential pilots facing health challenges that stand in their way. The Privileged Pilots Project also aims to raise awareness about sickle cell disease and make Casgevy available to anyone who needs it, no matter their income.  

As Cressy explained in the interview with People, “[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%.”

(feature image: Pexels/Lidija Ostojić)

Have a tip we should know? [email protected]