A young man’s journey with hemophilia and gene therapy, part 2

Second in a series. Read part one.

For most of his life, 21-year-old film student Domenic Catrine assumed weekly infusions were his destiny while living with hemophilia B. By the time he entered college, the rhythm of mixing vials and finding veins had become routine — even if he sometimes let that routine slip. Then, during his sophomore year at New Jersey’s Montclair State University, everything changed.

His mom received the call first as doctors discussed the possibility of Domenic receiving gene therapy, a treatment he hadn’t even realized was available.

At first, the idea felt surreal. Was it really possible that one infusion could replace years of weekly treatments? Could hemophilia finally take a back seat in his life?

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The opportunity came at a pivotal moment. In college, Domenic had discovered how easily treatment slid down his priority list. Without his mom’s constant reminders, he often skipped or delayed doses.

“I had to give myself a hard look in the mirror,” he said. “If I wasn’t going to be responsible enough to take my medicine the way I should, maybe gene therapy was the best option.”

Still, the decision wasn’t easy. His biggest concern was that the therapy might not work. The vector used to deliver the corrected gene was a common one. If his body built immunity to it, he might never qualify for another gene therapy in the future, even if better versions became available.

“What if this doesn’t work and I ruin my chances down the line?” he wondered.

A mother’s role

His mom, who had been at the center of his care since birth, was there every step of the way. She attended the initial appointments, asked questions, and helped Domenic sort through the pros and cons. But she also gave him space to decide for himself.

“She’s always been very involved, especially with hemophilia,” Domenic said. “But she wanted me to answer the doctors’ questions myself. She supported me, but she let me make the choice.”

It was a delicate balance: her desire for him to embrace the promise of a new treatment and his need to own the decision as an adult.

When the day finally arrived, Domenic expected it to feel momentous. Instead, it was surprisingly ordinary.

“The day of the infusion was very anticlimactic — and that’s exactly what my doctors said it should be,” he recalled.

He brought along his Nintendo Switch and played Mario Kart while the therapy was being prepared in the lab. The infusion itself took about an hour. Afterward, he was under observation for several hours before heading home.

Even up to the last moment, Domenic had the option to walk away.

“Until they brought the treatment into the room, I could have said no,” he said. “That’s what I appreciated from my doctor’s team the most, just their lenience with how new and scary something like this is. They really understood.”

In the end, the infusion itself was simple. The harder part had been the decision: accepting the risks, trusting the science, and daring to believe life could be different.

“I had to be honest with myself,” he said. “I wasn’t always consistent with my medicine. This was a chance to change that — not by being more responsible, but by giving myself a new start.”

Next week, Domenic shares what life has been like since receiving gene therapy.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.