Liam’s Lighthouse Foundation launches 2nd annual Histiocytosis Awareness Event
Liam’s Lighthouse Foundation is thrilled to announce their Histiocytosis Rare Disease Day Awareness Campaign which will take place at The Today Show in NYC on Rare Disease Day, February 28, 2011. Liam’s Lighthouse Foundation is dedicated to raising awareness of all 6 types of Histiocytic diseases, providing support to families affected by these diseases, and funding research. It all began with a little boy named Liam.
Can you imagine hearing your 14 month old child has been diagnosed with a highly fatal blood disease after 10 months of multiple visits to the pediatrician, specialists, diagnostics, and misdiagnosis after misdiagnosis only to find out that his only chance for survival is to undergo a bone marrow transplant? How does a parent cope with that?
Liam Schulze was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). HLH is a life-threatening immunodeficiency. It affects people of all ages and ethnic groups. Common symptoms are fevers, enlarged spleen, low blood counts, liver abnormalities, and sometimes neurological involvement. The onset of HLH is usually early in life, and a permanent cure can only be achieved through a bone marrow transplant. In some ways, histiocytosis is similar to cancer, and has historically been treated by oncologists with chemotherapy and steroids to try and quiet the disease, ultimately needing a bone marrow transplant, but it is not cancer. It was once reported that HLH had a prevalence of 1 out of a million. It has recently been reported to be 1/150,000, although this may be an underestimate. Unpublished observations are showing this to be more like 1 in every 50,000 live births due to better detection. Histiocytosis qualifies as an orphan or “rare” disease since there is no government funding for much needed research. “It continues to amaze me how many children are affected by this disease and it is still referred to as “rare”. I do not believe it is rare. I believe it is misdiagnosed or not diagnosed at all.” states Liam’s mom.
Liam lost his battle 41 days post bone marrow transplant for HLH on September 9, 2009. Liam’s mother, Michelle, was inspired to continue the fight he no longer could against this horrific disease. She founded Liam’s Lighthouse Foundation in her brave little boy’s memory shortly after he passed away. “If this disease is not diagnosed, it cannot be treated and if it’s not treated, it is fatal” states Michelle. It continues to bother her that physicians are still not able to identify this disease even though it has been diagnosed since at least 1985. Physicians are not diagnosing these children in time and then it’s too late for treatment to be effective in more than one of these diseases. This is why Michelle founded Liam’s Lighthouse Foundation. The harsh reality is that most physicians are not familiar with HLH, many of which have never even heard of the disease. HLH is going undiagnosed or misdiagnosed, and many children have died before a diagnosis could be made due to its rapid, fatal nature. If Liam had been diagnosed at 4 months of age when his symptoms first became apparent, he may still be alive today. Educating the community, parents, and our primary care medical professionals is mandatory so a diagnosis can be made. Parents are their children’s best advocates and are part of the team to provide their children the best possible chance for early detection and survival.
This year, supporters of Liam’s Lighthouse Foundation will again travel to New York City on this day. The plan is to fill the crowd outside with as many “Faces of Histio” as possible. There will be over 55 “Faces of Histo” in the crowd. Volunteers including Histio parents from all over the world, including the United Kingdom will be attending this event. As Michelle continues to emphasize, “There is power in numbers, and in numbers we can make a difference”.
ABOUT LIAM’S LIGHTHOUSE FOUNDATION: Liam’s Lighthouse Foundation, 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 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.
Contact Information: www.liamslighthousefoundation.org
Michelle Schulze – Founder/President: firstname.lastname@example.org
Rochelle Wilkinson- Activities Coordinator: email@example.com
Jennifer Mercereau- PR Director: firstname.lastname@example.org