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The Stearns Family

Erica Stearns and her husband hold hands while they each hold one of their two children with complex medical needs

“DSCC was one of the first organizations to step into our lives. They were some of the first social workers who came into our home and really began helping us to navigate our new lives with a medically complex child.”

— Erica Stearns, mother of Margot and Caratacus

“DSCC has played a tremendous role in helping our family to thrive”

Erica Stearns is the proud mother of two children who are enrolled in the Home Care Program.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services.

Caratacus Stearns sits in a high chair while doing an activity with family members The Home Care Program helps children who require in-home nursing care. Home Care participants include children and adults who receive services through the Home and Community-Based Services Waiver for children who are medically fragile and technology-dependent (MFTD).

Margot, soon-to-be 6, and Caratacus, 4, Stearns both qualify for the MFTD waiver. They were born with a rare lanosterol synthase (LSS) genetic mutation that causes profound intellectual and physical disabilities.

“DSCC was one of the first organizations to step into our lives. They were some of the first social workers who came into our home and began helping us to navigate our new lives with a medically complex child,” Erica said.

These new lives included learning how to cope with the unexpected of her children’s rare condition and the emotions that come along with it.

Erica Stearns smiles at her daughter, Margot, while gently holding her face

“DSCC has played a tremendous role in helping our family to thrive, really. Not only have they helped to provide the means for us to care for our children at home rather than in a hospital or an institution, they’ve also supported us emotionally throughout every step of this journey,” Erica said.

“They are the people who we can guarantee to check in on us regularly, to tell us about a resource or a charity that might benefit our children, and they even go so far as to send birthday cards to each of the kids, which I just can’t express it enough how touching and heartwarming that singular gesture is.”

In 2021, Erica became involved with DSCC’s Family Advisory Council (FAC). The council connects families to resources and provides guidance to strengthen DSCC’s teamwork, improve communication and empower families to have a voice in their child’s care.

Erica soon volunteered to chair the council. She said she enjoys the unique opportunity to learn about and discuss current initiatives related to supporting families of children with special healthcare needs.

“All too often, families like our own feel as though many decisions are made without our knowledge or input, which ultimately impacts our children and our family as a whole. The DSCC Family Advisory Council is a safe space where our concerns and our input are not only valued and requested but also received with respect and Erica Stearns and her husband each carry Caratacus and Margot inside their homegenuine consideration,” she said.

Erica also appreciates the opportunity to network with other families from across the state and partner with professionals as well. This collaboration helps lead to supportive solutions for families throughout Illinois.

“It brings me immense comfort to know that (and be a part of) a team of people who place the family perspective at the center of their discussions and decisions,” she said.

Erica also started a podcast called, “Atypical Truth.” The podcast focuses on issues affecting caregivers, individuals with disabilities and individuals with complex medical conditions. One podcast episode highlights DSCC Care Coordinator Amanda Kaufman, who previously worked closely with the Stearns family.

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