11 August 2025
By Halle Parker
Contributing Writer
(Veritenews.org) — Daniel Cressy yawned, tired after three days of watching a machine pull blood out of his body, extract his stem cells and pump the blood back in. Tubes protruded from the side of his neck, preventing him from turning his head. He gestured toward them while sitting in his hospital bed at the Manning Family Children’s Hospital.
“It’s uncomfortable at first, but then you kind of get used to it,” he said recently.
The tubes were annoying, but, to Cressy, the reward is more than worth the discomfort: freedom from sickle cell disease. This procedure marked the first major step toward what he hopes is a long-lasting cure for the rare genetic blood disorder.
Daniel Cressy, 22, of Metairie, begins a gene therapy treatment to cure his sickle cell disease at manning Family Childrens in New Orleans on July 30, 2025. Manning Family Children’s is the only hospital in Louisiana to offer gene therapy treatments for sickle cell disease, which is typically cured through bone marrow transplants.
Courtesy of Botic/Verite News and CatchLight Local/Report for America
Over the next year and a half, Cressy’s genes will be altered to remove the trait that causes his red blood cells to sickle, or harden and bend in a way that blocks blood flow and causes immense pain. He will be the first patient in Louisiana to complete the gene therapy treatment.
The 22-year-old’s stem cells will be sent to a lab in Scotland where they will be treated with an enzyme to reach a specific part of the cells and edit the gene to stop his blood cells from changing shape. Then, Cressy’s edited stem cells will be returned to Louisiana and infused back into his body. More than 90 percent of the patients in a clinical trial who received this treatment known as Casgevy, went at least a year without sickled cells blocking blood flow.
The process is long and expensive. Between insurance approvals, paperwork and preliminary doctor appointments, it took Cressy nearly a year to get to this room. But, for Cressy, it’s the only way to achieve his dream of becoming a commercial pilot.
Three years ago, Cressy discovered his love of flying, but after hours of lessons, working toward his certification, he was told his dream might be impossible. People with sickle cell disease seeking a pilot’s license face scrutiny over their health backgrounds from the Federal Aviation Administration.
High altitudes can make cells more likely to sickle, creating the risk of intense pain while in the air if there isn’t enough oxygen.
“The Office of Aerospace Medicine routinely reviews evolving medical therapies and updates policies when there is proof that new treatments are safe in the aviation environment,” said an FAA spokesperson in a statement.
Cressy applied for his medical certification in 2022 but was rejected despite several appeals. To Cressy, his condition was manageable. Unlike many people with severe cases of sickle cell disease, he hasn’t needed frequent hospital visits and blood transfusions to avoid pain.
“One thing that people don’t understand is that sickle cell affects everybody differently,” he said. “I believed that I could fly without getting cured.” But the FAA disagreed.
When Cressy first asked for the treatment, his hematologist, Dr. Zach LeBlanc, said no. To LeBlanc, a career in aviation didn’t seem like a top medical priority. But Cressy’s passion – and an official rejection from the FAA – changed LeBlanc’s mind.
“The more I got to know him, I understood that it wasn’t as superficial as it appeared the first time,” said LeBlanc, a pediatric hematologist with the hospital who was part of clinical trials to develop another long-term sickle cell cure. “He was really serious about this, and he understood the risk.”
Traditionally, bone marrow transplants have been the primary way to provide long-lasting relief, but patients have to fit specific criteria and find an unrelated donor with a close genetic match. The right bone marrow donor is hard to find, and Cressy didn’t have many options for a cure until two gene therapies were approved by the Food and Drug Administration in 2023. Children’s Hospital is the first in the state to be approved to administer the treatments.
Cressy and LeBlanc hope other sickle cell patients will soon receive better care. The Louisiana Department of Health recently estimated that at least 3,000 people in the state have been diagnosed with sickle cell anemia.
The disorder occurs mostly in Black people like Cressy. It’s caused by a genetic mutation that evolved and spread across much of Africa as a response to malaria. People who only have one sickle cell gene are at least 90 percent more resistant to malaria, but if a person inherits two sickle cell genes, they will develop the painful disorder.
Many health care providers and researchers, including LeBlanc, now acknowledge how the medical community has historically neglected and stigmatized patients with the disorder. But LeBlanc believes, especially with the addition of new treatments at Children’s Hospital, that such care is starting to improve.
“Sickle cell disease in the state of Louisiana is hopefully in a time where it can really change,” he said.
There are still vast areas in rural parts of the state where basic care for sickle cell isn’t available, especially for adults, but there’s been an uptick in attention, he said.
Advocates for people living with the disorder say that attention is much needed. Courtney Davis is the deputy executive director of the Sickle Cell Association of South Louisiana. He said the state legislature has begun to pay more attention to the disorder, forming a commission and starting a registry to monitor the prevalence of the condition in 2021.
“There’s a lack of knowledge about sickle cell,” said Davis, who is also living with sickle cell disease. “We’re always trying to garner more support for sickle cell all over the state.”
Compared to other rare disorders like cystic fibrosis, there’s a large disparity in both public and private funding for sickle cell treatments and cures, researchers have found. Disparities in health care for Black Americans also affect how patients are treated.
Rhonda Chube, a community health worker with the Sickle Cell Association of South Louisiana, said her clients often face stigma when trying to receive care. They struggle to get hospitals and employers to understand the severity of their pain, she said.
“They may look okay physically, but what’s going on inside their body is where the problem is,” she said.
The condition also comes with financial burden due to hospitalizations, transfusions and regular doctor appointments. Chube and Davis said it’s nearly impossible to survive the disorder without insurance.
Many patients also need insurance in order to afford a curative treatment like Cressy’s. The medication alone costs $2 to $3 million. The stem cell collection and infusion, among other doctor visits, add another few hundred thousand dollars.
Lynn Winfield, Manning Family Children’s Hospital’s senior director of patient care services, said it can take more than a year for private insurance providers to approve reimbursement for the procedures. Without that guarantee, neither the patient nor medical providers can afford the treatment. Medicaid recipients are easier to get approved, but Winfield said she worried that could change with recent federal cuts to funding.
Winfield said the hospital is already lining up more patients, including a boy from Shreveport.
Cressy hopes he is only the beginning. He plans to advocate for more people with sickle cell as he goes through treatment and is excited to eventually become one of the first commercial pilots with the disorder. Cressy will be following in the footsteps of a friend with sickle cell who participated in a gene therapy clinical trial in Atlanta two years ago. They met through a Reddit post, bonding over experiencing the same roadblock to aviation. That friend, Cressy said, has since received a pilot’s license.
“Becoming aviators with sickle cell was once something that people thought was impossible,” he said from his hospital bed, wearing a Mr. Impossible t-shirt that he created. “My buddy has already proved to the world that it’s not. Nothing is impossible.”
This article originally published in the August 11, 2025 print edition of The Louisiana Weekly newspaper.