For the first six months of Erin Mallicoat’s life, she looked and behaved like a typical baby.
“Then she started missing her milestones and getting sick all the time,” recalled her mother, Paula. “We took her to a number of specialists within Advocate Medical Group, but she wasn’t getting well.”
Finally, Paula and her husband, Ron, took their daughter to see a geneticist. That’s when they learned Erin had mosaic Down syndrome, which happens when an extra copy of chromosome 21 is present in some, but not all, of the body’s cells.
“It was quite a shock,” admitted Ron. “You have it in your mind that your child is going down one path and then you have to reset.”
“In Erin’s case, 75% of her cells have the extra chromosome. She doesn’t present as a typical person with Down syndrome, which is why no one suspected she had it,” Paula added. “Once she was diagnosed, we were able to get her more specialized care at the pediatric Down syndrome clinic at Advocate Children’s Hospital.”
The Mallicoats were already involved with Advocate Lutheran General Hospital and Advocate Children’s Hospital. Ron chaired the development council and served on the boards for Advocate Charitable Foundation and Advocate Health Care. He still serves on the Advocate Lutheran General governing council.
“By the time Erin was diagnosed, I had already developed a network at the hospital and was familiar with the pediatric Down syndrome clinic and the Adult Down Syndrome Center,” he said.
Erin had several years of outpatient appointments, including speech therapy, occupational therapy and physical therapy.
“It was really a continuum of care,” said Paula. “The pediatric clinic would consult with the experts at the Adult Down Syndrome Center, and they all worked together to find any specialty care we needed at Advocate Lutheran General. They always had tremendous, coordinated care.”
When Erin was in first grade, she started to pay closer attention to the conversations between the doctors and her parents.
“She asked what Down syndrome was and whether everyone else knew she had it. It was a big deal for her, and she felt compelled to give a speech to her class to tell the other students about it,” said Ron. “It became quite the event at her school.”
Evolving care
As Erin entered her teenage years, she transitioned her care to the Adult Down Syndrome Center.
“The care team at the Center does a great job of treating the body, mind and soul. There’s such a high quality of care you see present in everything they do,” said Paula. “And it’s not just medical care. Erin enjoyed participating in different activities and events like the Fitness, Fun for Everyone 5K Run/3K Walk. She recorded a video on healthy eating for the Center’s online Resource Library, which is a great source of information for patients, families and caregivers.”
Erin is especially close to Dr. Erin Dominiak, who she’s known almost her whole life.
“Dr. Dominiak was a resident at the family practice where Erin was a patient,” explained Ron.
“They hit it off immediately – the two Erins,” shared Paula. “Just listening to them is entertaining. Erin enjoys going to see her so much that I sometimes wonder if she makes up symptoms so she can go to the Center.”
Erin is now 23 years old and recently graduated from P.A.C.E., a special needs program at National Louis University. She continues to receive care at the Center, but she and her family are also getting a new level of support.
“We’re in the process of trying to figure out where she’ll live now that she’s finished college,” said Paula. “The Center has connections to local homes that specialize in housing individuals with varying levels of developmental disabilities. It’s been a great resource for us.”
Because of the extraordinary care they’ve all received, the Mallicoats are also generous donors. And Paula is a longtime volunteer.
“We feel it’s important to support the Center for many reasons. One inparticular is all the research they do, not only with Down syndrome, but also Alzheimer’s. The Center isn’t just helping our family; it’s also helping care for future generations,” explained Paula.
“The majority of patients are covered by Medicaid, which means the Center is operating at a loss,” added Ron. “Without charitable gifts and support from the Advocate Medical Group, there would be no Adult Down Syndrome Center. It’s very personal for us, so this is where we choose to give our gifts and time.”
How you can help
The Adult Down Syndrome Center relies on charitable gifts to provide patient care and support, along with education and resources, in a compassionate, welcoming environment.
Recently, a close friend and loyal supporter of the Adult Down Syndrome Center agreed to donate $2.75 million if the Center could raise an equal amount in philanthropic support. Funds will help the Center expand services and resources and share its findings to support adults with Down syndrome who do not have access to a clinic such as ours.
Please considering making a gift to support individuals with Down syndrome and families like the Mallicoats.