Liam was our first born child and our little "powerful warrior" the meaning of his name. He passed away in my arms at only 20 months old from complications post bone marrow transplant for HLH, 6 months after his treatment began. He started showing signs and symptoms of HLH at 4 months old but not one doctor could give us a diagnosis. We were told countless times, "It's just a virus." For 10 months, we watched our son suffer as he was dying right in front of our eyes. Even a pediatric oncologist/hematologist could not tell us what was wrong along with four other specialists. After a very long and frustrating journey to find the truth, Liam was finally diagnosed with HLH on March 26, 2009 at The Children’s Hospital in Aurora, CO. We decided to transfer his care to a hospital that specializes in this disease, Cincinnati Children’s. We did not want to have any regrets and were willing to do whatever it took to get him the best care possible. Unfortunately, the odds were not in his favor due to late diagnosis and not having a bone marrow match out of 13 million people on the national and international registry. This significantly delayed his treatment protocol ultimately leading to more complications going into transplant. Liam received his cord blood transplant on July 30, 2009 and passed away 41 days later in my arms. This disease is so harsh and so unpredictable. We were told it’s either HLH or cancer and to pray it was cancer.
Liam would be 11 years old this year.
I have been through life’s most unspeakable journey, losing my child. Instead of shutting down and wallowing in self pity or striking out against uncontrollable forces, I have chosen to continue Liam’s fight. I fought for my son since he started showing symptoms at 4 months old, throughout his 10 months of undiagnosis, and for the remainder 6 months of his life after his diagnosis. I am pushed by his memory to continue his journey against HLH. I have spent countless hours working on the foundation in his name. This path is not something I chose, but one I can’t escape.
I am just a mom with a dream of changing the outcome for HLH patients and honoring my son’s fight by doing so.
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.