Our middle son, Dillon Atticus Hobbs, was diagnosed at 8 days old with a rare and fatal genetic condition called peroxisomal biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD). This means the peroxisomes within one’s cells are not functioning correctly, or at all, leading to all major organs and systems being affected. This disease exists on a continuum, meaning the more severely affected do not see their first birthday while others may live into early adulthood.

Dillon was on the severe end of the spectrum and we were given 6 months. The diagnosis was heartbreaking and debilitating. After his diagnosis, he was sent home to live as normal a life as he could, and he did. We ate dinner as a family, his big brother got to change his diapers, and he got to watch a lot of hockey with his father. Dillon died at home at 5 weeks old, in the loving arms of his parents. Dillon was rarely not in someone’s arms as he spent his short life being loved by everyone who ever knew him.

His life and death taught us to cherish the important things and love with all we can. We have no doubt his life and legacy has made an impression on those who knew him and loved him. We hope to honor Dillon and his life by continuing to spread a little love while unwaveringly fighting for a cure for this disease that affects our most precious and vulnerable.

​Currently, there is no cure for PBD-ZSD, but we have hope thanks in part to the amazing work being done by The Global Foundation for Peroxisomal Disorders (GFPD). The GFPD is the sole organization with the mission to fund research, educate, and support families affected by peroxisomal disorders.