Founder & Host of Atypical Truth
she/her/hers/disabled/caregiver/mom
Erica Stearns draws on her unique and multi-dimensional perspective on navigating life with disabilities as both a disabled adult and the proud mother/caregiver of two children with disabilities and a rare medically complex disease. These experiences have led her to a life of advocacy which she exercises through her career at The Arc of Illinois and in her roles as the chair for the Patient and Family Advisory Councils for the Division of Specialized Care for Children (DSCC) and Cardinal Glennon Children's Hospital. In 2022, Erica was the recipient of the Care Fellowship through Caring Across Generations (Illinois cohort). Most notably, Erica is the founder and host of Atypical Truth, a nonprofit charitable organization and podcast which explores the storied experiences from the lives of caregivers and disabled adults.
Born with non-isolated esophageal atresia and tracheoesophageal fistula (TE Fistula), Erica developed paralyzed vocal cords rendering her mute until the age of 3, g-tube dependent until the age of 5, and tracheostomy dependent until the age of 15. Throughout her childhood and early adulthood, she witnessed her family face numerous challenges as they confronted many complex medical issues and health care systems.
Today, she is the proud mother of two beautifully bald miracles, Margot and Caratacus (Cary). As a result of an extremely rare and only recently discovered Lanosterol Synthase (LSS) genetic mutation, her children have a long list of diagnoses, including profound intellectual and physical disabilities. Erica states that their rare disease journey has and will continue to consist of numerous life-sustaining medical devices, doctors appointments, frequent hospitalizations, therapy services, difficult decisions, hard conversations, and countless joyful moments for which she feels incredibly blessed to experience.
The beginning of her journey as a rare disease parent was, as she describes in Season One, "equal parts unexpected and frightening as it was exciting and enlightening." Erica soon realized that the sum of her life experiences had prepared her to be exactly the mother her children needed her to be: a fierce, vocal, and experienced advocate for their quality of life. Through the gracious support of wonderful friends, she was encouraged to use her unique voice to share more about her atypical life.
The truth component of the podcast title was derived from her desire to educate society by providing a multi-dimensional perspective of a disabled life from all angles. Through the lens of her experience in multiple roles (patient, parent, caregiver, and medical professional), she believes that it is integral that we to learn from storied experiences of the disability and rare disease community to understand better the journey, purpose, and intentions of those who enter our complex lives. Erica believes that the very act of providing care is the most loving act of all.
Proceeds raised during Season One were distributed across multiple memorial funds to honor the lives of Margot and Cary's friends (children) who all share the same rare form of epilepsy. The remainder of the proceeds were donated to Cardinal Glennon Children's Hospital Foundation, through the Luke Sky Walker's 2021 Sun Run fundraising campaign.
