A Ball of Light: Resilient Cyrus Keeps Fighting

Battling Chronic Granulomatous Disease has defined four-year-old Cyrus’ young life

The long flight from Los Angeles to Dulles had just touched down. The plane was still taxiing to the gate. Four-year-old Cyrus, sitting with his mother Crystal and father Chahriar, was still buckled in his seat but his attention had already turned to what was coming next. With a wide grin on his face, Cyrus turned to his mother and asked: “Playroom?”

Cyrus first discovered the playroom at The Children’s Inn in August 2023 when he was just three years old. Born in Los Angeles just a few months before the COVID-19 pandemic, he has been coming to NIH to fight Chronic Granulomatous Disease (CGD), a genetic disorder in which white blood cells are unable to kill certain types of bacteria and fungi. People with CGD are highly susceptible to frequent and sometimes life-threatening bacterial and fungal infections.

“Cyrus is a ball of light,” said Crystal. “He is really a joy. He is very interested in everything. Anything that he sees, he has lots of questions and he wants to know how it works. And he wants to physically see it and touch it and do it, and maybe even take it apart. He’s very aware. From the moment he was born, he was looking around like, ‘what is this place?’”

Crystal described CGD as “an invisible life-threatening illness.” As a baby, Cyrus could be irritable. New to parenthood, his mother and father just thought he was a typical moody baby. In addition, he would not gain weight very quickly, and wounds took a long time to heal. But his various maladies were never serious enough to warrant a hospital visit, and his pediatrician could treat them simply enough. “He had a bunch of things that were unusual,” remembered Crystal. “But they would heal. These things were never a problem for long enough.”

In September 2021, when he was not quite two years old, Cyrus contracted COVID-19. Unusually for someone his age, he did not recover quickly. One day, Crystal noticed him guarding the area around his appendix. That prompted a visit to urgent care where, for the first time, more extensive labwork was done. The doctors told her that her son had a raging infection coursing through his body and recommended an immediate emergency room visit.

The emergency room at Children’s Hospital Los Angeles performed a litany of tests. At first, doctors thought the results pointed to liver cancer. A day later, they leaned more towards a rare care of tuberculosis. Finally, after the tests were sent out of state, the results showed that Cyrus was among the roughly two-in-a-million people born with CGD.

Suddenly, much of Cyrus’ early irritability made sense. CGD makes it nearly impossible for its sufferers to interact with nature. The bacteria and algae found in natural bodies of water, beaches, sandboxes, trees, or leaves can be fought off easily by a healthy immune system, but not one infected with CGD. Fortunately, doctors were able to prescribe prophylaxis medicines that allowed him to simply exist in the world around him. And the doctors at CHLA told his parents that a bone marrow transplant could be curative.

Cyrus was hospitalized at CHLA for over two months, undergoing surgery for a liver abscess. “It was hard,” recalled Crystal. “Nothing prepares you for this type of navigation.”

The doctors at CHLA wanted to rush Cyrus in for a transplant after the liver abscess had healed. Their treatment protocol, however, involved significant courses of chemotherapy. Crystal and Chahriar did not want that for their toddler. If chemo was necessary, they agreed, they wanted to use the least possible amount.

Fortunately, a friend told them about Dr. Harry Malech at the National Institute of Allergy and Infectious Diseases. Though Cyrus would have to wait until he was four years old, NIAID was recruiting participants for a study of the Jasper protocol, a bone marrow transplant procedure that would call for a minimal amount of chemotherapy.

Cyrus at the Hummingbird Golf Clinic at TPC Avanel while he was staying at The Inn

For most of the next two years, Cyrus shuttled between home and CHLA, where he would have to stay for multiple prolonged visits. “He went from no medications to a lot of medications,” said Crystal. “There were a lot of blood draws, and the medication made him nauseous. We became experts at predicting when he would throw up, and we had vomit bags all over the house and the car.”

The sudden changes in Cyrus’ routine were jarring for the toddler. “One of the biggest difficulties for us was getting him to take his meds,” Crystal remembered. “I would have to hold him down to force him to take them, multiple times a day for over a year. He started to take pills early on – at age three, which was a miracle. That helped eliminate the vomiting. But then he started not wanting to take his meds. So much has happened in his medical history I try to decipher if it’s just because of his age or if it is the trauma, or both. It’s a trauma that doesn’t go away. But we just keep adapting and learning how to ask the right questions so we can advocate best for Cyrus.”

In August 2023, as he approached his fourth birthday, Cyrus made his first trip to NIH and The Children’s Inn. He immediately fell in love with The Inn. A precocious eater – Crystal laughed as she described him ordering cheese fondue, lamb chops, and artichokes while inpatient at the Clinical Center – he especially loved the toy food and kitchen in the playroom where he could prepare his own make-believe meals.

For that first visit, Cyrus threw himself into as many activities at The Inn as he could, including a field trip to TPC Avanel for a children’s golf clinic. He was officially cleared for the transplant in late February and arrived back at The Inn on March 10. The transplant took place on March 29.

Though his doctors are not yet fully satisfied with his test results in the months following the transplant, Cyrus has been able to start venturing out into the world. Since the transplant, his parents have been able to reward the continued difficult treatments with trips to Santa Monica Pier, where he is now able to play arcade games and play in the sand. Fortunately, Cyrus and his family were not directly impacted by the wildfires that ravaged Los Angeles, though it was undeniably a traumatic experience for him and everyone living in the area. He is resilient and energetic, though, and loves music – particularly electronic and classical music. “He loves to dance,” laughed his mother. “He’s a little raver at heart.”

His doctors and family are hopeful that his numbers will begin to stabilize and show decreasing levels of CGD in his body. If not, there will be other options available as he continues through the five-year study that he has joined. For now, he looks forward to a normal childhood, including the start of kindergarten in the fall as he remains a ball of light for everyone he meets, at home or in the playroom at The Children’s Inn.