Jaxen was diagnosed with pulmonary hypertension, a life-threatening condition, when he was only 11 years old. Through his mom’s advocacy—and the help of Cincinnati Children’s Lung Transplant Program—he has a second chance at being a kid.
It all started with some “weird things” happening at home. Jaxen, who was 11 years old at the time, began complaining that the ground and walls were shaky.
“He’d have these dizzy spells where he wasn’t able to walk around,” Jaxen’s mom, Cas, said. “It was getting to the point where he was crawling on the floor.”
For two months, doctors ran tests trying to determine the cause of the dizziness. One of the tests, an echocardiogram, discovered the right side of Jaxen’s heart was enlarged.
The heart center near the family’s home in Illinois diagnosed Jaxen with pulmonary hypertension, a chronic condition that develops when the blood leaving the right side of the heart faces increased resistance, or pressure. Although there are treatments available to relieve some of the symptoms and slow the progression of disease, there is no cure for pulmonary hypertension.
“It was pretty shocking to find out Jaxen had an incurable disease because there was nothing really leading up to it that would point to that,” Cas said.
Unfortunately, Jaxen’s condition was severe and quickly worsened. Once admitted to the hospital, he began to have spiking fevers and developing cold- and flu-like symptoms. No matter what medicines his doctors prescribed, Jaxen kept getting worse.
“They could just never come up with any answers for him,” Cas said.
As Jaxen’s health continued to decline, “everyone was talking about how he’d need a double lung transplant to survive," Cas said.
Still, Cas wanted a second opinion, so she did some online research and found Cincinnati Children’s.
“Cincinnati immediately said they'd take him," Cas said. “It was a totally different experience coming to Cincinnati [Children’s].”
When Jaxen arrived at Cincinnati Children’s in June 2024 through coordination with Russel Hirsch, MD and the Pulmonary Hypertension team, his heart and lungs were so overworked and damaged that he was on extracorporeal membrane oxygenation (ECMO), a life-support treatment designed to temporarily take over the function of those organs.
“He had one of the worst cases of pulmonary hypertension we’d ever seen,” said Don Hayes, Jr., MD, MS, a pediatric pulmonologist and medical director of Cincinnati Children’s Lung Transplant Program. “He needed a transplant, but he was also critically debilitated,” meaning he was very weak and couldn’t get out of bed.
In order to be added to the waiting list for a lung transplant, and to improve his candidacy, Jaxen needed to become healthier and stronger both physically and nutritionally. This would also ensure a successful recovery. After a team discussion, David Morales, MD, the surgical director of the Lung Transplant Program, operated on Jaxen to switch his mode of support from ECMO to a lung assist device (LAD) that directly connected to his lungs and could take over the function of his lungs but allow his heart to work and be rehabilitated.
“The lung transplant team knew he was too weak to be a successful lung transplant recipient. Therefore, we chose to place an LAD to allow for rehabilitation and allow his heart to recover so a heart lung transplant could be avoided,” said Dr. Hayes.
As part of Jaxen’s pulmonary rehabilitation program, occupational and physical therapists, as well as registered dietitians, began working to improve his overall health. He strengthened his core in the inpatient exercise room with a medicine ball, practiced eating food through his mouth again, and honed his fine motor skills by playing games.
Kelly Downey, RN, an ECMO specialist, spent a lot of time playing Pokémon with Jaxen.
“I have a 7-year-old son at home whose Pokémon-obsessed,” she said, “so it was easy to develop a rapport with Jaxen.”
Downey would even use playing Pokémon as a reward for Jaxen when she needed to coax him into doing something he didn’t want to do but was instrumental to his rehabilitation, such as walking the hallway.
“He’d always give 100%, no matter what,” she said. “He’d always try. I don’t know many adults who could do what he did.”
During the course of his treatment, Jaxen also had genetic testing performed that discovered a mutation called SOX17 that’s associated with pulmonary hypertension. As time progressed, it became apparent to Jaxen’s doctors that his disease had further progressed to include an even more severe form of pulmonary hypertension called pulmonary veno-occlusive disease (PVOD). This is a rare progression that has only been described in children with his particular genetic mutation disease. This change in his disease resulted In the small veins in the lungs also becoming blocked. This too is not treatable with medications, making lung transplantation the only viable option for Jaxen.
Prior to Jaxen, the SOX17 gene mutation had never been associated with PVOD.
“I say what Jaxen had was like winning a lottery ticket but not in a good way,” Dr. Hayes said. “The odds against what this kid had were pretty insurmountable.”
Despite the odds, Jaxen’s condition gradually improved. He progressed from getting out of bed to taking a few steps on his own. Over time, he was able to walk for up to two minutes without needing to stop and rest. His nutrition also improved, as he began getting most of his calories from food rather than supplements.
“He didn’t go [into the lung transplant] a sick child. He went in well nourished, walking around and feeling good physically and mentally," said Dr. Morales. "This was all because of the fantastic work done by our physical/occupational therapy, nutrition, and child life teams partnering with our great Cardiac ICU nurses and ECMO specialists."
Cas said: “Cincinnati Children’s saved Jaxen’s life. He had to regain all of his mobility and basic skills. It’s crazy to see how well he did when I honestly wasn’t sure he was going to make it to his next birthday.”
Jaxen’s 12th birthday came and went, though, and he continued to grow stronger. Pretty soon, he was healthy enough to be listed for a lung transplant. Fortunately, he didn’t have long to wait.
“Even though it’s what we wanted, it was still shocking to learn a pair of donor lungs had become available for Jaxen,” Cas said. “I felt all the things—happy, scared, anxious.”
In October, Dr. Morales performed the successful lung transplant procedure. At first, Cas worried Jaxen was going to have a hard time recovering from the 12-hour surgery, but he was discharged from the hospital much more quickly than she expected thanks to the rehabilitation services he received before surgery.
While Jaxen continues to have daily appointments with clinicians and therapists to monitor his health, his doctors now call him the “poster child for lung transplant at Cincinnati Children’s because of how well he’s done,” Cas said, noting he’s had his breathing, feeding and chest tubes all removed.
“I am now a true believer in rehabilitation,” she said. “Getting Jaxen back to his strongest possible self was the best thing they could have done for him.”
(Published February 2025)
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