Brothers with CGD reach 11-year post-transplant milestone

For Zach and Jaxsen Hunkapiller, the holidays are always a special time. But this year, they take on even more meaning, because the brothers celebrated their 11-year transplant anniversary on December 5 to treat chronic granulomatous disease (CGD).

Today, Zach, 22, is finishing his last year of law school at Mercer University, and Jaxsen, 19, is exploring his future career options. Meanwhile, their mother, Dawn Adams, of Douglas, Georgia, savors every moment of the holiday season with them, from gathering around the table for Christmas dinner to making traditional family goodies, like her peanut butter balls.

These moments become even more precious as Dawn reflects back at what was happening this time of year when Jaxsen and Zach were both undergoing transplants in 2007. Leading up to this, her sons had faced several life-threatening infections. In fact, Zach had to be life-flighted to Savannah, Georgia at seven weeks old to treat a bowel obstruction; this harrowing journey ultimately led to his CGD diagnosis. Meanwhile, Jaxsen was diagnosed in utero. While Dawn had managed their CGD with standard prophylaxis, she was becoming more and more concerned about their future.

“We kept hearing that gene therapy was right around the corner for years, and if we could just keep them healthy, we’d be okay,” said Dawn. “But as they were getting older, we felt that time was running out.”

Soon, she began to seriously consider a stem cell transplant for her sons. Yet, both Jaxsen and Zach lacked bone marrow donors; their little sister Erynn was not a match. After researching transplant options, she chose Duke University Hospital, which performed transplants for several diseases with unrelated umbilical cord blood. Although it was a relatively new way to treat CGD at the time, Duke had already had some success using cord blood to treat the disease as well.

Jaxsen and Zach were admitted in November 2007, and while they were discharged in January 2008, they needed to stay close to the hospital for ongoing outpatient treatment until June of that year. While both transplants were ultimately successful, no outcome can be exactly alike, even for brothers. Today, Jaxsen continues to have health issues resulting from his transplant, including arthritis and delayed growth, while Zach has not.

“After having two boys go through transplant, I have seen a wide spectrum of what can happen,” said Dawn, who described her life as being so “fully consumed" with her boys’ care 11 years ago, that she could not remember how to operate the remote control for her television upon returning home to Georgia.

She understands that the hardest part for many parents of children with CGD is deciding whether to move forward with transplant. In addition to the deep fears they have for their children, many are daunted by the unfamiliar responsibilities they will face as primary caregivers in an acute setting. Dawn said she is thankful to the transplant team for spending countless hours educating her on how to care for Zach and Jaxsen throughout the transplant and recovery process. As a result, she said she felt confident that she could handle everything they needed, from central line care to administering their many medications after discharge.

Dawn offers these simple, yet powerful words of advice to help parents prepare for their child’s transplant journey, should they decide to move forward:

“You can do it, and you will do it,” she said.