Dominic’s Family Story

“What started as something we never would have chosen has brought relationships and connections I’m truly grateful for.”

Aurea Shelton has learned many lessons while caring for her 10-year-old son, Dominic Garvin. One of the most valuable is persistence.

“You take it one step at a time. You can’t control everything, but you can control your attitude and how you keep showing up,” Aurea said. “The place you’re in right now isn’t where you’ll always be.”

The place Aurea finds herself now is one of significant growth and pride in the connections she’s made and the confidence she’s gained to speak up on behalf of all families.

“What started as something we never would have chosen has brought relationships and connections I’m truly grateful for,” Aurea said.

The Division of Specialized Care for Children (DSCC) is one steady connection and partner through the highs and lows. DSCC has helped Aurea navigate Dominic’s evolving needs and strengthen her voice as a family advocate through the DSCC Family Advisory Council.

An up-and-down journey

Dominic was born with a large omphalocele. Omphalocele is a rare condition that affects the abdominal (belly) wall. It caused his intestines, liver and bowels to stick outside of his belly in a sac through his belly button.

The omphalocele’s size prevented his lungs and chest wall from fully developing. Dominic underwent major chest surgery at only six months old and eventually needed a tracheostomy and a ventilator to breathe.

“(His condition) has not been a linear thing,” Aurea said. It’s definitely a little up, a little down. It’s all trying to figure out what works best.”

The family spent many days and nights in the hospital during Dominic’s early years, with Aurea joking that she became “an honorary staff member.”

Dominic was eventually able to return home with in-home nursing support from the Home Care Program. DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services (HFS).

Dominic initially relied on his ventilator for most of the day. His DSCC care coordination team helped make sure his family’s home met the electrical requirements for his equipment. The team also helped Aurea find pulmonologists who were a good fit.

“(DSCC has) been a pretty easy program to work with,” Aurea said. “All of my case managers have been extremely helpful.”

Although she is an independent person, Aurea appreciates having a team to contact when a problem comes up, she has a question or she feels overwhelmed.

“It’s nice to have someone follow up with me consistently,” she said.

Finding a creative solution

Over the years, Aurea worked with Dominic’s Care Coordinators to set goals for his future. She also felt more empowered to pursue potential partnerships and resources to improve Dominic’s quality of life.

As Dominic grew more active, Aurea searched for a cart that could carry his ventilator and easily move beside him. When she could not find a good option, she got creative.

Aurea reached out to multiple engineering programs at the University of Illinois. Two groups, MedLaunch UIUC and the Mechanical Engineering senior class at the University of Illinois Urbana-Champaign, agreed to work on the ventilator cart project.

The Mechanical Engineering senior class created a cart that Dominic used until he became less dependent on the ventilator. Aurea also connected both university groups with DSCC to help develop devices and solutions for other families of children with complex medical needs.

“Sometimes the solutions you need don’t exist yet,” Aurea said. “Be willing to get creative.”

Finding the confidence to speak up

One of Dominic’s Care Coordinators encouraged Aurea to check out DSCC’s Family Advisory Council (FAC). She attended an open forum and officially joined in 2023.

“DSCC does a really great job implementing what families are saying and putting feedback into play,” she said.

The FAC helped Aurea build her confidence to speak up and network.

“Hearing other family stories encouraged me to step out of my box and use my story to help with change,” she added. “Sometimes you don’t even know what’s possible until someone else shares their experience.”

Through the FAC, Aurea learned about an opportunity to share her lived experience with the Camden Coalition. The New Jersey-based nonprofit works to improve care for people with complex health and social needs.

Aurea applied for and was accepted into the coalition’s National Consumers Scholars Program. Through the program, she took part in leadership, skills development and peer-to-peer learning activities. She also shared her family’s story on the main stage of the Camden Coalition’s national conference. The next year, she returned to the national conference to present as part of a research group she was working with.

“It was super cool to have those opportunities and use my voice in that way to propel change,” she said.

She also brought lessons and resources from the experience back to her local community.

“It’s still worth it to keep trying”

Aurea encourages parents and caregivers of children with complex medical needs to welcome help, work with others and never stop asking questions.

“No one will advocate for your child better than you. You have to be willing to speak up,” she said.

“There’s so much knowledge and support out there. You just have to tap into it.”

Today, Dominic is in fifth grade and becoming more independent. He no longer needs the ventilator during the day. He also uses an Augmentative and Alternative Communication (AAC) device to express himself.

“He’s very independent, and his personality is coming through,” Aurea said with a laugh. “He gets perturbed and lets it be known.”

She remains focused on fostering Dominic’s independence and providing as many opportunities as possible to reach his full potential. When a barrier arises, Aurea continues to look for a new path forward.

“I’ve learned that effort doesn’t always lead to a ‘yes,’ but it’s still worth it to keep trying,” she said.

“There are more resources out there than you think. You just have to look and ask.”