Frankfort family helps support people with CHARGE syndrome
You can’t miss the house. The ranch home that sits on a corner in Frankfort’s Lakeview Estates neighborhood is completely surrounded by festive inflatable lawn decorations.
It’s the home of Dominic Steinhauser, a 12-year-old boy who is obsessed with inflatables, according to his mom, Deanna Steinhauser.
“We have inflatables for every season, every holiday, every celebration,” Steinhauser said. “Inflatables are his life. He loves them.”
Every Christmas season, the Steinhauser family places holiday inflatables all over their yard, from knee-high cartoon characters to massive Santas. Some of the decorations light up and others are animated.
The display is also designed to raise awareness and money for the CHARGE Syndrome Foundation, a nonprofit organization that conducts research about the illness, and supports those living with it.
Dominic has CHARGE syndrome, a complex genetic illness that affects children from birth, causing a range of serious symptoms. It is named for symptoms originally used to diagnose the condition: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and development, and Ear abnormalities.
For Dominic, a seventh grader at Hickory Creek Middle School, CHARGE causes significant breathing and airway issues. He has been admitted to the hospital at least 60 times in his short life, his mom said, and has had more than 30 procedures or surgeries.
Most recently, doctors operated to clear fluid from his lungs. It’s a surgery he will endure every six to eight months, helping him stay as healthy as possible.
One of Dominic’s many procedures kicked off the inflatable festival three years ago, when Deanna Steinhauser made him a promise as they prepared for surgery at Lurie Children’s Hospital in Chicago.
“I told him if he did the procedure like a rock star, he would get an inflatable. He did it like a rock star, so I got him an inflatable,” Steinhauser said.
“I put it on Facebook, thinking nothing of it. The next thing we know, the doorbell rang. Someone sent him an inflatable. That first year, in four weeks, we got over 100 Christmas inflatables.”
Raising money for the CHARGE Syndrome Foundation has been a 12-year project for the Steinhauser family, which also includes Dominic’s dad, Bill, and his older sister, Kylie, a freshman at Lincoln-Way East High School.
Normally the family hosts the CHARGE Christmas
Dominic and his family waved Thursday from the driveway to passing cars that slowed down to gawk at the inflatables and drop donations into a fishing net being extended from the curb. Santa Claus was even on the scene, waving to his fans.
Over the past several years, Dominic has suffered hearing and vision loss caused by CHARGE syndrome. He also cannot eat by mouth, receiving his nutrition through a feeding tube. Despite Dominic’s challenges, his mom said he’s an active child who loves video games and plays baseball on an adaptive team.
“He sounds like a sick kid who would be laying in bed all the time,” Steinhauser said. “But he’s a typical 12-year-old boy who loves to run around, text his friends and has the best outlook and humor of any kid I’ve ever met. His joy is beyond what anyone can understand.”
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