Each year, approximately 1 in 200,000 people worldwide is diagnosed with chronic granulomatous disease (CGD), a primary immunodeficiency disease in which certain white blood cells are unable to kill some types of bacteria and fungi. In the fall of 2021, 2-year-old Gus was one of the ~20 people in the US diagnosed with CGD annually.

 

Gus's diagnosis came after he contracted an extremely rare bacterial infection that resulted in sepsis, with internal and external necrotic lesions throughout his small body. Since his family was living in Mississippi on military orders at the time, Gus began treatment at Children's Hospital of New Orleans. After months of continuous care for infection, he began prophylactic treatments for CGD. His care was transferred to Duke Children's Hospital in the spring of 2022, and he was hospitalized there for almost 70 days that summer. On June 22, 2022, Gus received a transplant. Though successful engraftment occurred in July, the transplant was complicated by veno-occlusive disease (VOD), acute graft vs host disease (GVHD), acute kidney injury (AKI), and, later, chronic GVHD.

 

It has been a challenging road to recovery, but thankfully Gus was cured from CGD! He has completely recovered from VOD, AKI, and acute GVHD, and he is currently almost free from chronic GVHD symptoms. Today, Gus is an active 4-year-old who enjoys playing with model trains, helping conduct the huge model train exhibit at a local music store, playing with his 3 sisters, and going to preschool! Thanks for helping Preston's League support Gus and all of the other patients on the Duke PTCT unit. You're the best!

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