8 years ago our lives were shattered by a disease that is rarely diagnosed...HLH (Hemophagocytic Lymphohistiocytosis)
What Is HLH? It is a life-threatening condition of the immune system. Patients with 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.
Our son Ethan "Champ" Carle was the most curious and loving little boy, with a smile and giggle that was contagious. He was full of wonder and adventure...always playing and happy. In April of 2012, Ethan became ill very suddenly with a high fever. After days of ER visits with no real answers, Ethan was admitted for testing where doctors found his liver and kidneys were failing and had systemic inflammation. He was flown to Children's Hospital of Philadelphia where doctors there diagnosed with him HLH. His own immune system cells were attacking itself and that "cytokine storm" was causing multi organ failure.
Ethan began the treatment protocol of chemotherapy and high dose steroids immediately. At the time, that protocol was the only way to treat HLH but it came with risks, the harsh medicines caused an already broken immune system to weaken and made Ethan vulnerable to further illness. Ethan did develop a blood infection and his already fragile immune system was overcome by the illness. On May 9, 2012, he passed away surrounded by his family.
The 5K to Fight Histio funds life-saving research that has helped catapult the development of drug that can help treat HLH without the harsh chemotherapy treatment! Won't you help us to continue the fight for Ethan and so many other angels and warriors??
Please consider making a donation and joining our team today!
Thank you for your support! Lynn & Tom Carle and family.
Liam’s Lighthouse Foundation
5818 Charlois Court | Colorado Springs, CO 80922-2226 USA
Liam's Lighthouse Foundation (LLF), a non-profit, tax-exempt organization, was established to create and provide educational material and awareness about Hemophagocytic Lymphohistiocytosis (HLH) including Histiocytic Disorders, and to distribute unbiased, factual information to physicians, hospitals, and the community regarding this disease. Our focus is also to bring families affected by HLH/Histiocytosis together and offer support through a variety of resources. We aim at raising much needed funds for continued education of physicians and research to develop safer and more effective treatment methods and ultimately a cure. LLF is also dedicated to bring awareness to the community about the importance of becoming a blood and bone marrow donor.