Stories of Lives Transformed: Learning to Fly
When Victoria Gray was three months old, her mother gave her a bath. Victoria started crying, and nothing her mother did seemed to soothe her. She brought her to the hospital in Goodman, Mississippi, thinking she must have injured her newborn’s arm. The doctors couldn’t identify anything physically wrong with Victoria so they conducted blood work. When the results came back, the news was devastating. Victoria had a particularly aggressive case of sickle cell disease.
Frequent blood transfusions helped Victoria reduce her crises. But her life was marked by countless trips to the hospital and almost unremitting pain, which she described as “getting struck by lightning and hit by a truck.” She couldn’t take part in physical activities like other children and felt a growing sense of isolation and hopelessness as she missed out on the life that others took for granted.
When she reached adulthood, she started a family and found a sense of purpose and determination caring for her children. But her health problems continued to wear her down. The breaking point came one day when she was receiving an infusion of ketamine in one arm and Dilaudid in the other and realized even this cocktail of drugs did nothing to diminish her pain. Victoria told her doctors she could no longer live like this. She was only 34 years old.
A few months later, she was in hospital waiting for yet another bone marrow transplant when her doctor told her about an experimental new treatment that could potentially cure her disease. How experimental? It had never been tried on a human being before. Victoria was so desperate, she was willing to be the first-ever recipient.
Sickle cell disease is a group of genetic blood disorders that affects approximately 100,000 Americans, 90% of them Black. The disorder causes red blood cells to become hard and sticky and to “sickle” into a crescent shape. These misshapen cells clog small blood vessels and block blood flow, causing severe chronic pain in the chest and limbs, deep fatigue, anemia, and damage to vital organs.
Sickle cell disease was the first disease ever identified as being molecular in origin. The two-time Nobel Prize winning chemist Linus Pauling, who did so, envisioned that one day sickle cell disease could be cured through some kind of genetic intervention. In the 1950s, researchers identified the exact amino acid mutation in the hemoglobin cell that caused the disease. In 2014, Jennifer Doudna, the Nobel-prize winning pioneer of CRISPR gene editing, proposed that sickle cell disease should be the first target for her technology because its genetic cause was well-understood and the suffering was so widespread.
Five years later, in July 2019, Victoria Grace began treatment with CRISPR technology at Sarah Cannon Research Institute in Nashville, Tennessee. Doctors infused four vials of edited “supercells” into the same catheter they used for blood transfusions.
“Is this it?” Victoria asked. When told the treatment was over, she started to cry. It seemed so quick after 34 years of suffering.
Those edited cells traveled through her blood stream and into her bone marrow, where they started multiplying and spreading. Miraculously, the treatment took. Over the following months, her red blood cell count stabilized and she no longer needed blood transfusions. Today, she’s considered cured and leads a normal, pain-free life.
“It felt like an answered prayer for me,” Victoria said. “CRISPR not only freed me, it freed my children.”
That breakthrough helped accelerate FDA approval of two different genetic therapies for sickle cell disease in December 2023.
Victoria’s post-infusion experience was not as simple as it sounds, however. Unlike some cell and gene therapies, the treatment takes months, starting with high-dose chemotherapy to clear old red blood cells from the bone marrow and make way for new cells. At this point, the patient is highly vulnerable to infection and experiences many of the harsh and sometimes painful side effects that are associated with a bone marrow transplant.
Kendric Comer, a 12-year old boy in Washington D.C., was one of the first to receive FDA-approved treatment in May 2024. His journey started when doctors collected stem cells from his bone marrow and sent those cells to a facility in New Jersey for gene editing. Four months later, the edited cells were shipped to Children’s National Hospital in D.C. for Kendric’s infusion.
Kendric and his parents had been told that he’d experience painful side effects related to the chemotherapy while his new red blood cells multiplied. But there were times when the ordeal felt overwhelming. At one point, unable to talk because of swelling and inflammation, Kendric would shake his stuffed dog with bells around its neck whenever he needed something from the nursing staff.
But then, just as suddenly, those symptoms started to recede. One Saturday night, Dancing with the Stars was on TV, and Kendric said, “Mommy, let’s dance.” So they stood up in his hospital room and danced — something that would have been impossible a few months ago because of the pain of his disease. “It felt great,” Kendric said. “Apparently, I’m a good dancer.”
After 44 days, Kendric was finally able to leave the hospital. “I thought I would have sickle cell for the rest of my life,” he said.
As with other cell and gene therapies, cost is a huge barrier to access. Few can afford the price tag, which ranges between $2.2 to $3.1 million per treatment.
In July 2025, CMS launched the Cell and Gene Therapy Access Model to facilitate CGTs for Medicaid beneficiaries across participating states. Sickle cell disease was the first condition to be included in the pilot program. Daniel Cressy was the first person in Louisiana to receive treatment with Medicaid approval.
Daniel had been diagnosed as an infant and lived with the pain of the disease all his life, but he’d always been determined to not let the disease stop him. When he was 19, he discovered he had a passion for flying and decided he wanted to be a commercial airline pilot. Soon, he began flying lessons and was on track to earn his certificate. But when he applied to the Federal Aviation Authority for his First Class Medical Certificate, a rigorous physical exam required of pilots every six months, the FAA rejected Daniel because sickle cell disease makes high altitudes dangerous.
His denial letter, however, outlined how he could go about getting reconsidered. His application for a commercial licence would be granted if he presented documentation showing he’d undergone genetic therapy for sickle cell disease.
Daniel was anxious about such a new treatment but felt like he had no choice. He asked his doctors to look into how he could become a candidate. They reported back that the Manning Family Children’s Hospital in New Orleans was the only hospital in Louisiana approved as a treatment center. Once Daniel got accepted as their first patient, it took two more years before treatment could begin.
In July 2025, the doctors at Manning Family Children’s harvested his bone marrow stem cells over two, 6-hour-long sessions. Those cells were sent to Scotland for editing. When he finally received his infusion in March 2026, he gripped his FAA letter in his hand during the procedure.
Daniel spent the next month in the hospital before release. A hundred days after treatment, his hemoglobin tested normal for the first time in his life, making him functionally cured. He immediately set about reapplying for his pilot license, new documentation in hand.
He sees his journey, however, as bigger than himself. “I don’t want anybody else to have to experience the loneliness and the uncertainty and the hopelessness that I felt a couple of years ago. Even just last year, it was so uncertain,” he said. “But overcoming it, now I know that if I can do it, anybody can do it.”
To that end, Daniel co-founded Privileged Pilots with his friend, Kyle Registre, who’d been cured in an earlier clinical trial and became the first sickle cell patient to receive his commercial pilots license. Their non-profit helps people with sickle cell disease get access to treatment and obtain necessary financial and life assistance while also encouraging them to experience flight and pursue aviation careers.
“Aviation is just the icing on the cake,” he said. “The big idea is we're making history, and we're paving a way for the new generation to come — inspiring with our stories and our ambitions to let everybody know that you can do anything as long as you put your mind to it.”
Together, they’re helping as many people as they can learn to fly.
