05/27/2026
💙 It's Warrior Wednesday 💙
🚗 Today's post honors warrior, Charlie 🚗
Charlie was diagnosed with primary HLH triggered by CMV, caused by a rare genetic mutation called XIAP deficiency (XLP2). At just 18 months old, after persistent fevers and critical illness, he began treatment with dexamethasone and Gamifant before undergoing a mismatched unrelated donor stem cell transplant on 7/15/25.
Initially, Charlie engrafted successfully and showed incredible strength through months of hospitalization, chemotherapy, infections, transfusions, procedures, and isolation. However, post-transplant CMV reactivation became severe and difficult to control despite aggressive antiviral therapies, Cytogam, and CMV-specific virus-targeted T-cell (VST) infusions.
As the CMV worsened, Charlie experienced graft failure and recurrence of HLH. The virus ultimately spread to his lungs, causing CMV pneumonitis and severe respiratory failure. After fighting with unimaginable courage for months, Charlie passed away on 10/22/25, one month after his second birthday.
Charlie changed every life he touched. His strength, joy, resilience, and light continue to inspire us every single day, and we are committed to honoring his story and raising awareness for HLH, XIAP deficiency, and pediatric transplant complications.
