Remembering Liam

January 2, 2008 was the happiest day in Michelle and Christopher Schulze’s lives. That was the day when their son, Liam Christopher, was born.

Their happiness turned to concern when, at the age of 4 months, Liam started having high fevers that recurred at the same time every month, lasting about a week. Visits to numerous doctors, including many specialists, and a lot of tests couldn’t explain what was happening to Liam.

In March 2009, after suffering a crisis and having more tests, Liam finally was diagnosed with Hemophagocytic Lymphohistiocytosis, or HLH, a rare blood disorder. Symptoms of HLH include rash, pallor, jaundice, recurring high fever, liver and spleen enlargement, neurological symptoms including irritability and seizures, and a severe decline in blood cell counts. It is so rare that most physicians are not familiar with the disease. It is estimated that HLH affects 1 in every 50,000 to 200,000 children born in the United States each year. Left untreated, it is usually fatal.

Liam was diagnosed after a bone marrow biopsy revealed phagocytosis—a condition in which specialized types of immune cells that normally eat foreign substances start attacking other blood cells. The Schulzes took him to a leading expert in HLH at Cincinnati Children’s Hospital, who told them their little son needed a bone marrow transplant to have any chance at survival.

Unfortunately, a suitable donor for Liam could not be found. Liam was treated with chemotherapy, high-dose steroids, transfusions and dozens of other medications, and received a cord blood transplant. Although the transplant was successful, Liam developed complications and passed away on Sept. 9, 2009.

Since then, Michelle Schulze has devoted her life to educating people about HLH.

“I started Liam’s Lighthouse Foundation because my son has inspired me to make a difference in the world of Histiocytosis and continue the fight he no longer could against this horrific disease,” she writes on the Web site she established. “HLH is going undiagnosed or misdiagnosed, and many children have died before a diagnosis could be made due to its rapid, fatal nature.”

Michelle Schulze hopes the foundation will raise awareness about HLH, as well as offer support to affected families, and to let people know how important it is to become a blood and bone marrow donor. She urges everyone to register with the National Marrow Donor Program, www.marrow.org, and dkmsamericas.org; organize a bone marrow donor drive; write their congressmen about the importance of saving cord blood and making HLH testing mandatory for newborns; and donate blood, platelets and plasma.