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.

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