Rhaiden

Rhaiden started to get sick when he was only a month old. After three emergency room visits, he
was finally diagnosed with a rare blood disorder called hemophagocytic lymphohistiocytosis (HLH). When he was about 7 months old, Rhaiden had a genetic test. We were told that it was negative and that his HLH would never come back. His counts were never back to normal, but he seemed better, and when he did get sick, he seemed to get over it.

When he was around 22 months old, he started to get sick again and again. Doctors kept telling me that it was just something viral. After I pushed for more tests, I was told that his HLH was indeed back. The specialists were puzzled. They contacted the HLH Center of Excellence at
Cincinnati Children’s Hospital, where Dr. Jordan suspected that Rhaiden probably has one of the rare, aggressive, and life-threatening genetic mutations of HLH called XIAP deficiency.

~Iza, Rhaiden’s Mom

Hemophagocytic Lymphohistiocytosis Syndrome

Hemophagocytic lymphohistiocytosis (HLH) is a condition in which the body makes too many
activated immune cells. People with HLH usually develop symptoms within the first months or
years of life. Symptoms may include fever, enlarged liver or spleen, cytopenia, and neurological abnormalities. HLH may be inherited in an autosomal recessive manner or it can have nongenetic causes, in which case it is called acquired HLH.

Artist: Robert Francis Whelan