About Jillian
Jillian is a wife to her partner, Donald, and a mother to her two children, Roman and Stella, who both live with an ultra-rare and life-limiting genetic disorder, ASMD (Acid Sphingomyelinase Deficiency), also known as Niemann-Pick Disease Type A/B.
Their son was born in September 2018 and diagnosed with ASMD in May 2019, at which point their world was completely turned upside down. ASMD is a progressive, multi-system genetic disease that can lead to early mortality. There is currently no known cure, but promising treatments are in development. The disease primarily affects the liver, spleen, and lungs, and in the most severe cases—like that of her two children—it causes rapid neurodegeneration in the brain, often compared to a form of “baby Alzheimer’s.”
To make matters even more complex, Jillian and her husband learned they were expecting their daughter just days before receiving Roman’s diagnosis. After testing Stella at birth, they received the devastating news that she, too, carried the same genetic condition and was also diagnosed with ASMD. Their hearts were shattered not once, but twice.
Shortly after Stella’s diagnosis, Jillian left her job at a brewery to become a full-time medical mama and caregiver to her children. She made it her personal mission to do everything in her power to pursue treatment options for Roman and Stella. In 2021, she launched a GoFundMe to help accelerate promising research that could improve quality of life and potentially extend the lives of her children and others affected by this disease. With the support of friends, family, acquaintances, and strangers, she has helped raise over $130,000 (and counting) toward critical research.
Jillian also sits on the Research Participant Advisory Committee, Safety Advisory Committee, and Emotional Roadmap Committee at her local children’s hospital, where she helps bridge the gap between patients and families and hospital leadership, providing feedback to researchers and administration with the collective goal of improving care experiences and advancing health outcomes through research. She is also a member of the Family Support and Assistance Committee for the National Niemann-Pick Disease Foundation.
Jillian is also a podcast host, author, and advocate. She published her first children’s book, Soaring Together, created to help introduce conversations around disability, inclusion, and difference through the lens of her family’s lived experience. Through her podcast, she shares their journey with the intention of connecting with other parents raising medically complex children and offering space for honesty, grief, hope, and community.
She also speaks at events, conferences, and advocacy gatherings, sharing her family’s story in an effort to raise awareness, inspire action, and elevate the voices of rare disease families.
Through her work, Jillian hopes to help other parents realize that while a diagnosis like this can be devastating, it is still possible to find light, meaning, and connection in the midst of it.
Donate to help support Roman & Stella's Care, Treatment and Daily Needs
We are a family navigating life with two children who have ASMD (Niemann-Pick Disease Type A/B), a rare and progressive genetic disorder. Our GoFundMe helps support a wide range of needs related to their care, medical expenses, accessibility, and ongoing treatment efforts. Thank you for your support.
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