Liam’s Story Liam was our first born child and our little HLH Symptoms "powerful warrior", the meaning of his name. He passed away in my arms at only 20 months old HLH can be challenging to diagnose HLH from complications post bone marrow because the initial symptoms may transplant for HLH. He started showing signs mimic common infections. and symptoms of HLH at 4 months old but not Diagnosis one doctor could give us a diagnosis. We were • Persistent fevers HLH can only be diagnosed told countless times, "It's just a virus." • Rash with proper blood tests in the • Enlarged lymphnodes appropriate clinical setting. After a very long and frustrating journey to find • Jaundice Doctors might collect some the truth, Liam was finally diagnosed with HLH • Coughing fluid from the spinal canal to on March 26, 2009. Unfortunately, the odds were look for HLH in the brain. It is Liam’s Lighthouse Foundation (LLF), a not in his favor due to late diagnosis and not • Trouble breathing important to remember certain non-profit, tax-exempt organization, was having a bone marrow match out of 13 million • Seizures malignancies (including established to create and provide educational people on the national and international registry. • Altered mental status leukemia and lymphoma) can material and awareness about Hemophagocytic mimic HLH. Lymphohistiocytosis (HLH). This significantly delayed his treatment protocol ultimately leading to more complications going Our focus is also to bring families affected by into transplant. Liam received his cord blood HLH/Histiocytosis together and offer support transplant on July 30, 2009 and passed away 41 Types of HLH through a variety of resources. We aim at raising days later in my arms. This disease is so harsh HLH happens more often in infants HLH treatment much needed funds for continued education of and so unpredictable. and children. But it can occur at any These treatments suppress physicians and research to develop safer and age, including in the teenage years the immune system which more effective treatment methods and I am pushed by his memory to continue his and adulthood. HLH can lead to liver helps decrease the damage to ultimately a cure. LLF is also dedicated to bring journey against HLH. I am just a mom failure, breathing problems, a patient’s body. awareness to the community about the with a dream of changing the inflammation in the brain, and the • Steroids importance of becoming a blood and bone outcome for HLH patients and inability to fight infection. • Chemotherapy marrow donor. honoring my son’s fight by • Antibody therapy doing so. Primary or Familial HLH is Most physicians are not familiar with HLH, many 1caused by an inherited problem of • Bone Marrow Transplant of which have never even heard of the disease. the immune system. HLH is going undiagnosed or misdiagnosed and many have died before a Secondary HLH can occur when diagnosis could be the immune system is disturbed SAVE A LIFE made due to it’s rapid, 2but not necessarily because of an DONATE TODAY fatal nature and inherited condition. survival. Our Mission