Parenting Children with a Rare Disease: Our Conversation with Jillian Arnold

Hosts Erna and Megan welcome Jillian Arnold, who shares her family’s journey after both of her children were diagnosed with ASMD, a rare and progressive genetic condition. Jillian Arnold is the proud mom of two children, Roman and Stella, who both live with ASMD, a rare and terminal genetic condition. She’s the host of Confessions of a Rare Disease Mama, a podcast where she shares honest conversations about caregiving, medical parenthood, and finding purpose through life’s hardest moments. Jillian is also the author of the children’s book Soaring Together, which celebrates inclusion and differences, inspired by her own family’s journey. In addition to her creative work, she’s a passionate rare disease advocate and speaker."

 

In this episode, Jillian discusses the early diagnosis, building a trusted care team, and navigating treatments while raising awareness through her podcast and children’s book. She also opens up about the everyday realities of caregiving — the importance of advocacy, finding community both online and in person, and carving out small acts of self-care to sustain resilience. Jillian reflects on how her experiences have positioned her as a resource for others facing similar challenges.

If you would like to find out more about Jillian and her work check out her website: https://www.confessionsofararediseasemama.com/