Claire

Today we have the honor of sharing Claire’s story as told by her mom. Our foundation was able to get connected with them from our trivia night in STL.

Claire B. (age 15)

HLH Survivor

Diagnosed July 18, 2013

She has been in remission since 2016.

Claire was only three years old when she began spiking dangerously high fevers. After several trips to the pediatrician, we were told that 104° fevers were concerning but likely caused by a virus. The plan was to keep her hydrated and wait ten days for the illness to pass. During that first week, we went back for chest X-rays and blood tests—everything came back normal.

But deep down, I knew something was wrong. Normally, when I gave Claire Tylenol, she would perk up and play once her fever broke. This time, she didn’t. For a week, we worked closely with our pediatrician, hoping she would improve, but when she didn’t, I made the decision to take her to the children’s hospital. I told myself it was just for IV fluids and that we’d be home in a few hours.

That night, Claire was admitted. By the next morning, her abdomen had begun to swell, she was struggling to breathe, and doctors rushed her into exploratory surgery. They found intestinal lesions—something the head of the department said he had never seen in 30 years of practice. Claire was still spiking fevers, and no one knew why. I went home briefly to shower, and by the time I returned, she had been moved to the PICU.

For five more days, multiple teams of specialists searched for answers. Finally, a medical student on the gastroenterology team suggested testing Claire’s ferritin levels, which measure inflammation and immune activity. A normal ferritin level is around 30. Claire’s was 33,000. The diagnosis: Hemophagocytic Lymphohistiocytosis (HLH)—a rare, life-threatening immune disorder.

We began chemotherapy and immunosuppressive treatments immediately and remained in the hospital for over two weeks. When we finally went home, our world had changed. We were told to remove all houseplants to reduce infection risk and to keep Claire away from mulch, dirt, mold, and anyone who might be sick. For two years, she couldn’t go outside without a mask. The disease carried only a 30–50% survival rate. I was terrified—but I had to be strong for Claire and for my other children.

But our Claire is a fighter.

Those were the darkest days of our lives, but even in the midst of fear and uncertainty, light broke through. Our friends, neighbors, and community surrounded us with love and support.

When we learned that Claire qualified for Make-A-Wish, I hesitated. I thought it meant my daughter was terminal. But we were reassured—Make-A-Wish is for children with critical illnesses, not only those who are end-of-life. We decided to wait until her treatment ended—two years later—to make her wish come true.

During that time, we also traveled on Wings of Hope flights to Cincinnati, Ohio, for specialized HLH treatment. Since then, Claire has served on the Junior Board for Make-A-Wish and continues to support Wings of Hope. Together, Claire and I have helped raise over $200,000 for these incredible organizations.

Now, we want to give back again—this time to help other HLH heroes and their families find hope, just like we did.

We appreciate Claire’s family sharing their story and providing hope to so many on this journey