This is for John, my husband and best friend.
Labor Day was upon us and summer was ending. John finished the weekend with what seemed to be a case of strep and just run down from the weekend festivities. On Wednesday he was complaining of shortness of breath, so we went to the E.R., figuring he needed fluids, possibly had pneumonia. He never made it back home.
We endured 3 different hospitals and had every test imaginable completed. John was running a high fever, so they suspected a virus. He continually tested negative. At this point, a week in, they were just keeping him alive. Finally, a doctor suspected HLH, and sent us to a larger hospital to have support from more specialists. Unfortunately, this hospital didn't believe the diagnosis at first, and by the time they did, it was entirely too late.
We learned that most of the doctors had only read this in textbooks, and didn't really know best practices for identifying and treating it. Funding will also go toward continuing to educate the medical field about this disease, so that cases can be identified faster, resulting in effective treatments, and someday, a CURE!
and joining a team today!
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.