09/19/2026
June 2007 changed our lives.
We learned about a disease we had never heard of and did not know existed. HLH turned our lives upside down.
Daniel was only 13 months old when he was diagnosed with Familial Hemophagocytic Lymphohistiocytosis, an inherited form of HLH.
One day, we had never heard of HLH. Then suddenly, our lives were filled with labs, medications, treatments, doctors, decisions, and conversations we never imagined having about our child.
Daniel died in 2009 at 2 1/2 years old.
I will always wonder whether knowing about this disease before June 2007 could have made a difference. We will never know.
But that question is part of why bringing awareness to histiocytic disorders matters so much to us. We want people to know these diseases exist. We want families to have information we did not have. We want these diseases recognized and considered sooner.
We will continue sharing Daniel’s story and information about FHLH and histiocytic disorders because awareness begins when more people know.
Because we didn’t know. 💙
