BJ 1.25.24 Rare Disease 1164.JPG
January 25, 2024; A photo of Gail and Hayley on the dresser in Haley’s room at the Koujaian’s home in Prospect Heights, IL. Alec has Niemann-Pick Type C (NP-C) disease and is going through a series of treatments with an experimental drug at Rush University Medical Center in Chicago. In 2020, Alec’s sister, Hayley Koujaian, passed away from NPC at the age of 20. (Photo by Barbara Johnston/University of Notre Dame)
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