Honored Kid

Liam Christopher Schulze

Liam Christopher Schulze Kid Photo


Colorado Springs, CO, US


Hemophagocytic Lymphohistiocytosis (HLH)

Date of Diagnosis

March 2009



Treated At

Cincinnati Children's Hospital Medical Center

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My Story

Liam Christopher Schulze was born on January 2, 2008 to proud parents Christopher and Michelle. When Liam turned 4 months old, he began spiking high fevers that returned monthly, like clockwork, and lasting 5-7 days each time. After 10 months of multiple doctor visits, ER visits, other specialists, and a multitude of lab tests, not one doctor could explain why this was happening to Liam, NOT EVEN A PEDIATRIC HEMATOLOGIST / ONCOLOGIST! On March 24, 2009, Liam was admitted to The Children's Hospital in Aurora, Colorado. He presented with excessive sweating, uncontrollable fever, jaundice, distended abdomen, lethargy, and he had stopped eating and drinking. Liam underwent 2 diagnostic tests he had not had in the past; a lumbar puncture and a bone marrow biopsy. On March 26, 2009, a diagnosis was finally reached: Hemophagocytic Lyphohistiocytosis (HLH). LIAM WENT UNDIAGNOSED FOR OVER 10 MONTHS! HLH is not cancer but is treated like it with chemotherapy and steroids. Liam would require a bone marrow transplant to have any chance of survival. After some research, it was decided to take Liam to where the leading expert in the field of HLH was: Cincinnati Children's Hospital. Liam and his mom arrived on April 15, 2009. OUT OF NEARLY 13 MILLION PEOPLE ON THE WORLD WIDE BONE MARROW REGISTRY, A SUITABLE DONOR MATCH COULD NOT BE FOUND! Liam continued treatment with chemotherapy and high-dose steroids, among several dozens of other medicines, infusions, and blood transfusions for 4 months. Since a bone marrow match could not be found, Liam had to have a cord blood transplant and this took place on July 30, 2009. This procedure required Liam to undergo a myeloablative process, or severely high dose chemo to destroy his immune system completely, in preparation for the new stem cells from the cord blood. Liam's transplant was successful with a 93% donor engraftment. However, likely due to a prolonged wait for his transplant, as well as complications post transplant, he earned his angel wings on 9-9-09. For Liam's full story, you can visit www.carepages.com/carepages/liamslighthouse. For more information on HLH please visit www.liamslighthousefoundation.org and www.histio.org. Thank you for your support of our beautiful little angel.

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