A Mother’s Love Contributes to Rare Disease Research - Cincinnati Children's Blog

A Mother’s Love Contributes to Rare Disease Research

After her son, Liam, died at 20 months of age from the rare immunodeficiency disease called hemophagocytic lymphohistiocytosis (HLH), Michelle Slezak Schulze began Liam’s Lighthouse Foundation to support those diagnosed with the disease.

When Liam reached four months of age, he continuously spiked high fevers and suffered from a distended abdomen, swollen lymph nodes, jaundice and inconsolable pain. A bone marrow biopsy finally revealed Liam had HLH, meaning his overabundance of white blood cells caused his body to attack itself. Few doctors and patients know about the disease, so the Schulzes traveled from Colorado to Cincinnati so Liam could be treated by Dr. Lisa Filipovich, a leading expert in HLH.

Although Liam ultimately died, Schulze channeled her grief into fundraising and awareness-raising efforts to help other children and families deal with HLH.

Read more about this mother’s commitment to her cause and the foundation she started at TimesLeader.com.

Subscribe today for more stories, tips and updates.

Cincinnati Children’s News Team

About the Author:

The members of the news team at Cincinnati Children's are responsible for telling the stories of the medical center. Stories of the families we serve, research and clinical care, safe and healthy practices and happenings at the hospital. If it has to do with Cincinnati Children's, Danielle, Nick, Jim, Kate, Rachel, Terry and Shannon will keep you informed.

Write a comment


No Comments Yet! You can be first to comment on this post!