Real. Raw. Rare.
Real. Raw. Rare.
Join Jillian each week as she learns how to navigate life raising not just one, but two children living with an ultra rare and terminal genetic disease. And finding the beauty in all the chaos.
Meet the mama
Learn more about Jillian
Jillian is a wife to her partner, Donald, and a mother to her two children, Roman and Stella, who both suffer from an ultra rare and life limiting genetic disorder, ASMD (Acid Sphingomyelinase Deficiency or otherwise known as Niemann Pick Disease Type A/B).
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Their son was born September 2018 and was diagnosed with ASMD in May of 2019 and their world's were completely flipped upside down. ASMD is a progressive multi-system genetic disease that can lead to an early mortality. There is no known cure, but there are some promising treatments in the works. It primarily affects the liver, spleen, lungs and in the most severe cases (like that of her two children), it causes a rapid nuero-degeneration in the brain similar to a baby Alzheimer's.
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