Our Warriors

My name is Kyra Loehr, and I am 22 years old. Last summer was unlike anything I had ever imagined. I was diagnosed with Secondary HLH in June 2025. Doctors were unsure what triggered my HLH until a few months ago, when they narrowed it down to lupus. I didn't know I had lupus prior. I was treated at Regions Hospital in St. Paul, Minnesota. In July 2025, I was able to return home, but I still had months of rehab ahead of me. Today, I am feeling great and have not had any signs

Today we honor HLH warrior Ethan In November 2025, Ethan was admitted to the hospital with severe body pain and persistent fevers. After three long weeks of testing and uncertainty, he was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). Ethan then spent two weeks at the VG Hospital in Halifax undergoing chemotherapy and receiving blood transfusions. After completing treatment, his family was told he was responding well, had handled chemotherapy remarkably, and was fi

Today we honour Chad On Dec. 4th, 2025, my husband started to not feel well. For a month he had non-stop fevers and was in and out of urgent care. On December 30th, he was admitted to the hospital. Within a few days he was diagnosed with HLH and eventually diagnosed with primary HLH. The doctors were constantly telling us his case is so rare and they couldn’t explain how he made it to 45 before the generic HLH presented itself. For part of his battle, the HLH was in his CSF a

Today's warrior is, Chris My beautiful husband, Chris, was lost to HLH on January 24th, 2026. Everyone asks, “What is that?” They’ve never heard of it. On December 17th, 2025, Chris was driving his semi as an over-the-road truck driver near Beaumont, Texas, when his spleen ruptured. That alone is rare, but the next month became a living nightmare. Chris’s brother had to drive from Michigan to Texas since I was still recovering from an illness myself. Chris finally made it hom

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, chemotherap

Today we honor warrior, Hadley Hadley became sick during Thanksgiving week in 2019 with pneumonia. We were admitted to Neenah for a couple of days, and she seemed to perk up a little with the medication and blood transfusion she received. A couple of days later, she began throwing up a lot, and peds directly admitted us back to Neenah. A CT was performed, and the results I received that night were every parent’s worst nightmare. They thought Hadley had some kind of cancer. He

It was August before my 6th-grade year when my world changed forever. At just eleven years old, I was diagnosed with Acute Myeloid Leukemia — a battle I never expected to face. In September, everything took a frightening turn. During my first round of chemotherapy, the treatment triggered a dangerous flare of HLH. I was rushed to the PICU with a 106-degree fever and a heart rate over 300. The doctors told my parents to prepare for the worst. After confirming the diagnosis of

Hunter is 8 years old and was diagnosed with secondary HLH with the cause still unidentified. He was diagnosed with HLH during his maintenance phase of cancer treatment for ALL (Leukemia) in September of 2024. He relapsed a few months later in January 2025. He has since been able to keep his numbers under control while navigating rare inflammatory issues and other medical issues as a result of his cancer/HLH journey. Hunter receives treatment in Columbia at CUIMC/New York-Pre

Julietta was diagnosed at 7 weeks old with primary HLH. She fought long and hard and underwent chemo and steroids, starting when she was 8 weeks old. Julietta had a bone marrow transplant date but became sick before she could make it to transplant. She was matched with a cord blood donation after months of searching. Unfortunately, Julietta passed Oct 19 due to HLH and her brain swelling but she bravely fought till the end. She was a happy and playful girl that loved music an