Julia Fisher is the mother to three beautiful children: a sweet 4-year-old Maia who buzzes like a bee; an angel Maks who was stillborn from unknown causes, and another angel affectionately known as Luka The Lion. Luka fought bravely like a lion his whole life with a rare, undiagosed primary immunodeficiency disease thought to be unique to him and subsequent complications from a bone marrow transplant. As a former special education teacher, policy analyst, and grant writer, Julia is hopeful she can share her experiences with others to raise awareness about rare and undiagnosed diseases, newborn screening, and the importance of blood and bone marrow donation. Julia writes for resiliency on these topics and is a featured author on The Mighty.

To honor Luka’s spirit and support kids with rare disease and their family so nobody ever feels alone, Julia founded the LukaThe Lion Foundation with her husband, Zach Fisher, a dedicated team of Board of Directors, and The Pride of supporters. Through her efforts in the rare and undiagnosed disease community, Julia is honored to serve on the Rare + Undiagnosed Network (RUN) Advisory Board and Global Genes RARE Foundation Alliance.

Follow our story, including excerpts from Julia’s daily journal at