In April 2013, Akiva and Amanda Zablocki noticed that their eight-month-old son, Idan, was breathing strangely. Probably just a garden-variety virus, the pediatrician told them, one that just needed to run its course. For the next two weeks, they watched and waited—“he played, ate, and seemed perfectly normal,” Akiva wrote on the family’s blog, “except for his respiratory rate”—but when Idan’s energy level seemed to drop, they took him back for another look and an X-ray.
This time, the doctor sent them straight to the hospital, where Idan was admitted to the pediatric intensive-care unit and given oxygen to help him breathe. It was a few more days before doctors identified what was wrong with his lungs: PCP, a fungal pneumonia typically seen in AIDS patients. A test for the HIV virus was negative, and Idan was placed on a ventilator as doctors struggled to figure out why an otherwise healthy baby had an infection most commonly found in people with immune deficiencies.
The answer, they soon discovered, was hyper IgM syndrome, a genetic disease that affects just two out of every million people and renders the body’s immune defenses useless against even the mildest of infections. Immediately, the Zablockis’ lives became a flurry of financial calculations: Idan would need weekly immunoglobin infusions, which would cost thousands of dollars a month, until he could undergo a bone-marrow transplant, the only known cure for the condition. The transplant itself would cost hundreds of thousands of dollars; if it was unsuccessful, he would need the infusions for the rest of his life. And because daycare posed too much of a risk for Idan’s fragile immune system, Akiva would quit his job to stay home and take care of him, leaving the family with one income to cover it all.