(CONTRIBUTED/ Trey Lowery)
(LEFT) Trey Lowery, a sophomore computer science major from Luverne, was born without an immune system. At the time of this photo, in May of 2018, he only weighed around 70 pounds.
(MIDDLE) Lowery took this selfie the day his hair fell out after his chemo treatment earlier this year. “My hair falls out right before my birthday, like, the day before my birthday,” he said.
(RIGHT) Lowery took this last selfie a few weeks ago, before the start of this semester. Since undergoing gene therapy, he has put on a lot of weight, and hasn’t been getting sick as often.
For Rodricous Trey Lowery, a sophomore computer science major from Luverne, Alabama, it was more than just a random series of numbers.
Lowery, who goes by Trey, was born with a condition known as severe combined immunodeficiency syndrome (SCID).
The National Institute of Allergy and Infectious Diseases defines SCID as “a group of rare disorders caused by mutations in different genes involved in the development and function of infection-fighting immune cells.”
“Half my life I’ve been just been in and out of the hospital,” Lowery said. “Because my immune system, first of all, wouldn’t really protect me, but at the same time, it would also attack my body at some points.”
Lowery said he had his first bone marrow transplant when he was 2 and had several more after that. He also frequently had to receive shots designed to help boost his own immune system.
“So, the first years of life, I’m just doing that constantly,” Lowery said. “(I) didn’t really think anything was up. I thought all kids did that for a long period of time.”
His condition started to worsen when he was about 8 years old and developed a sensitivity to gluten.
“So no pizza, noodles or anything like that,” he said. “I didn’t really listen to that diet. I didn’t understand it at the time, but still, eventually I started losing a lot of weight and had to get a feeding tube put in, which I still have to this day.”
Lowery said that this cycle of being in and out of the hospital repeated up until his senior year at Luverne High School. That’s when a doctor at Children’s Hospital of Alabama did something that would change Lowery’s life.
One of Lowery’s doctors at Children’s was friends with a researcher at the National Institutes of Health (NIH). Lowery’s doctor referred him to the researchers at NIH who were testing gene therapy for the treatment of his disease.
Lowery had to travel to Bethesda, Maryland, where the NIH is headquartered. Once there, he was screened to see if he was a suitable candidate for the gene therapy treatment.
“So we did that, and they let me know I’m eligible,” Lowery said. “Then I went back twice for cell collection.”
Part of this cell collection process involved a series of G-CSF shots designed to stimulate bone marrow to produce white blood cells and stem cells.
He also had to have an apheresis line put into his neck. Apheresis is a medical technology that filters out a desired part of someone’s blood and then returns the blood to circulation.
Once the NIH had collected all the cells they would need for the treatment, Lowery still had a long wait ahead while the researchers modified his cells.
Gene therapy works by taking cells from a patient and modifying them to perform a certain task. For example, a mutated gene could be replaced with a healthy one, or a new gene could be introduced to help fight a disease.
In Lowery’s case, NIH researchers wanted to modify his cells to produce the proper compounds that would allow his immune system to function correctly.
Once the patient’s cells are modified to have the desired effect, they are put back into the patient.
Before his cells were modified and ready, Lowery had some other health issues he had to get taken care of in January before starting gene therapy.
Finally, after a few years of research and modification, the NIH was ready to begin Lowery’s gene therapy.
He began gene therapy in February 2019.
“I expected to be there around 2 months, but really it was just whenever my blood looked good enough to be released,” Lowery said.
Lowery began getting prepared for treatment. Two steps of this process involved awake surgeries.
One of these surgeries was a bone marrow biopsy.
“There’s no way to describe the pain of having bone marrow sucked from you while you’re awake,” Lowry said. “I’m pretty resistant to pain. I’ve lived through getting all this done, like over 100 surgeries or so, and I don’t have very good veins, so I get poked a lot.
“So it’s whatever, but I think I had to be held down by like five nurses for that bone marrow. It was not a good time.”
The NIH facility wasn’t quite what Lowery expected.
“During that time, I experienced that the NIH is really not a hospital,” he said. “It’s really just a government research facility, and I’m really just a test subject.
“They’re great scientists and researchers, but they’re horrible with people. They never let me leave my room. The only time I got called by name was when the doctors came in. But to everyone else, I was just a number: 7579299.”
But now, after the marrow biopsy was done and Lowery had received the gene therapy treatment, all that was left to do was wait.
For Trey Lowery, things got worse before they got better.
After receiving gene therapy and some chemo treatment, he waited to see the results.
Lowery said that his blood count levels dropped extremely low.
“So when I got the chemo, all my white blood cells and most of my red blood cells dropped,” he said. “Everything dropped shockingly close to zero. I didn’t expect it to get quite that close to zero.”
Lowery said that the drop continued until March 7. That’s when his blood counts finally bottomed out and started to climb again.
“So at that point I was looking forward to going home,” he said. “Skip a few days, and my blood counts were higher than they’ve ever been and I’m good enough to go.”
Lowery said he got sick once more and had to spend a little more time in the hospital, but that everything has been improving ever since then.
In May, Lowery had to return to the hospital once again, this time to get a TPN (total parenteral nutrition) port removed. Lowery’s immune system had previously been attacking his stomach, which he said meant “anything that went in just didn’t work.”
To get around this, he had to use a TPN port, which would handle the work of digestion and move nutrients directly into his bloodstream.
But Lowery’s TPN line became infected in May, and he had to have it removed.
Lowery said that after his last surgery, he is seeing numerous improvements.
“Ever since then, I haven’t been in the hospital,” he said. “Around July I noticed that I was starting to hold on to my weight and keep gaining pounds.
“The past few years I’ve been in the range of like 70 to 80 pounds, but as of today I’m like 107 or so.”
Lowery said that his appetite has improved now that he is using his stomach for digestion.
He still has to use a feeding tube, which he said can be very time consuming.
Lowery said it can take around 8 hours.
Lowery said it can be challenging trying to work feeding into his schedule and still have time to do everything else he needs to do.
Aside from weight gain, he said he has also noticed improvements in his skin. His immune system stopped attacking his skin, so it no longer dries up or flakes off constantly.
He has also noticed a decrease in acne.
Lowery lost his hair during his chemo treatment, but he said it has started to grow back quickly.
He is also currently taking less medication than he was before his treatment, and he said the end goal is to eventually eliminate all medication.
Lowery said that in his free time, he likes to just hang out with his friends.
“That was one thing I couldn’t really do growing up,” he said.
“Being a government test subject has benefits,” he added.
“A lot of downsides at first, but the benefits are lower down the line.”
Lowery also had some advice for anyone else going through tough circumstances.
“Stay the course,” he said. “Whatever you’re going through, keep going, you got it.”