Sean’s Tragic Battle Against Hemophagocytic Lymphohistiocytosis (HLH) Inspires Others

March 24, 2013

Seven-year-old Sean Fischel was always smiling. Even when he was laid up in a hospital bed, clinging desperately to life, he found a way to appreciate life and the love around him.

Sean died earlier this year after a long battle with hemophagocytic lymphohistiocytosis (HLH), a rare autoimmune disorder. Sean’s family is participating in genetic studies at the Children’s Hospital of Philadelphia (CHOP), vowing not to let their son’s death be in vain by helping other children who suffer from HLH.

Familial hemophagocytic lymphohistiocytosis (FHL) is characterized by proliferation and infiltration of hyperactivated macrophages and T-lymphocytes manifesting as acute illness with prolonged fever, cytopenias, and hepatosplenomegaly. Onset is typically within the first months or years of life and, on occasion, in utero, although later childhood or adult onset is more common than previously suspected.

-NIH

In a series published earlier this week on Patch, we brought you their story. In case you missed it, here it is, in three parts:

‘His Body Couldn’t Keep Up with His Spirit’

‘Tremendous Fighter, Little Angel’ Defies Odds Against Rare Disease

‘Sean’s Love is Living on in Everybody’

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Click here to make a donation to CHOP in Sean’s name.