HLH stands for hemophagocytic lymphohistiocytosis. It is a life-threatening condition that can be defined as either primary or secondary HLH. Primary, or “familial,” HLH is when the condition is inherited. The term secondary HLH is used when your doctor thinks the condition may have occurred for a variety of other non-inherited reasons.  Patients with primary HLH have cells of the immune system called T and NK cells that don’t work properly. These cells become overactive, causing too much inflammation. Ordinarily, these cells should destroy infected, damaged cells of the body. In HLH, the immune system begins to damage the patient’s own tissues and organs, including the liver, brain and bone marrow where blood is made.  Sometimes, doctors can see these angry immune cells “eating” other cells when they look at the bone marrow from a patient using a microscope. This process is called hemophagocytosis.

Connor Mason Jones was a bright and bubbly three-year-old before he was diagnosed with cancer. Connor showed his strength by beating cancer in seven short months! He endured so much and still had a long way to go with chemo so that the cancer wouldn't come back. With his immune system being more vulnerable, germs were easier to hurt him which is exactly what happened in February of 2013. He was initially admitted to the hospital for breathing problems and a fever. Through many tests, the doctors were unsure of what was making Connor sick.  We were blessed to have 4 more weeks with our precious warrior before he was diagnosed with Hemophagocytic lymphohistiocytosis (HLH).  Unfortunately, even though Connor’s body could fight off cancer, it could not fight HLH and we lost our sweet boy March of 2013.

Over the past five years we have held an annual fundraiser and have raised $160,000! We are very excited to be partnering with Atrium Health Foundation and Levine’s Children’s Hospital where they have started renovating a world-class BMT unit where future HLH patients will be treated.  This is set to open July 1, 2019 and we can't wait to be a part of it!   Also, in years to come, Levine Children’s Hospital hopes to become the southeast hub for HLH cases (currently there are only two, Cincinnati and Houston).  While this is so exciting for the HLH community, it is also very costly and can’t be done without your support!