The picture shown here was taken the week before I became sick in June 2008. I was 5 years old. I had a few nosebleeds a couple of months before, but we didn’t think anything of them at the time – after all, lots of 5 year olds get nosebleeds. But when I woke up one morning with blood on my face, bruising and purple and red spots (petechia) all over my body, we knew something was wrong and headed straight to our local emergency room.

Initial tests showed that my platelet count was 16. "Normal” is between 150 and 400. I was transferred to All Children’s Hospital nearby and that afternoon, my platelet count fell to 1. My liver was shutting down, my spleen was enlarged and had to receive blood and platelet transfusions. ACH ran lots of test and did a bone marrow and liver biopsy. Within a week I was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH).

HLH is so rare that most doctors have never heard of it. It primarily affects children — about one in 1.2 million. HLH originates in the bone marrow and causes cells to malfunction and destroy the body’s own red blood cells, white blood cells and platelets. It can cause permanent damage to the spleen, liver and central nervous system. HLH is fatal unless treated with chemotherapy and if that doesn’t bring it into remission, a bone marrow transplant is the final option.

There weren’t any specialists in our area who knew how to treat HLH, so our doctors in Florida relied on the expertise of Dr. Filipovich at Cincinnati Children’s Hospital Medical Center (CCHMC), world-renowned for her work in treating kids with HLH. She helped our local doctors diagnose Hannah, but their lack of experience and training in caring for kids with HLH made my mom very nervous.  Meanwhile, I was getting worse, and my mom decided to reach out to Dr. Filipovich and arranged a three-day visit in Ciny to determine the best treatment plan. We didn’t know then that it would be almost six months before we would return back home. Upon arriving at CCHMC, it was determined that I was critical and my ALT and AST liver levels were around 3,000. I was admitted immediately to start the 2004 HLH Protocol. Unfortunately, I did not respond and went into bone marrow failure. The only cure would be to have a bone marrow transplant and it took place on Friday, September 26th, one day before my 6th birthday! I received a peripheral blood stem cell donation from an unrelated 26 year old male donor, whom I hope to meet someday. Without this life saving option, I would not be here today.