Woman To Run Self-Made Marathon For Kids Born With Rare Syndrome

TINLEY PARK, IL — A Tinley Park woman who runs the Chicago Marathon every year was upset to hear the event was canceled this year due to the coronavirus pandemic. Laura Brown, a 33-year village resident, runs to raise awareness for a condition called Congenital Central Hypoventilation Syndrome (CCHS), a rare condition that affects only 1,200 people around the world, including her two children.

Rather than sitting this year out, Brown decided to create her own marathon through the streets and trails of Tinley Park. She hopes to raise awareness and funds for the Congenital Central Hypoventilation Syndrome Family Network, an outreach group.

CCHS is a rare breathing disorder that causes apnea, ineffective breathing or respiratory arrest during sleep and sometimes when awake, according to Wikipedia. The condition is present from birth and can be fatal if left untreated.

More information on the condition can be seen in the video below.

Both of Brown's children have CCHS: Josie, 3, who was born five weeks premature, and Robbie, 5, whom Brown and her husband Jeff discovered had the CCHS mutation after genetic testing recommended by their family's team of doctors.

On Oct. 11, at 8 a.m., Brown will be running the 26.2-mile course through the village. Brown will run six loops around the self-made course, with water stations available every two miles. She said she will be running the marathon no matter what weather conditions are presented that day.

This year, Brown set a goal to raise $6,000, which equates to $5 for each of the 1,200 people living with CCHS.

"I just want to bring as much awareness to this condition as possible," Brown said. "This cause is so important to me because it's personal. This medical condition has drastically changed our lives and priorities. Even though the marathon is canceled, I decided that I can still do this; and I will."

Brown is an English teacher at Amos Alonzo Stagg High School, 8015 W. 111th St., Palos Hills. She created a website about CCHS with information surrounding the condition, the route she will be running and how to donate.

The runner said she will be running the 26 miles alone, but anticipates friends, family and community members will join in for parts of the event.

"Anyone is welcome to join me on the course. I don't expect anyone to run the entirety of it with me," Brown said. "If people want to come around and cheer while they watch, they are welcome to do that too."

The donation page had reached half of Brown's $6,000 goal as of Wednesday afternoon. To donate to the cause, check out the GoFundMe page for CCHS.