Now that I’m back from vacation I’m catching up on so much good news back home. And this story I definitely didn’t want to let slip under the radar.

Originally reported on by CBS Chicago on October 6th, this story is about Tinley Park Mom Laura Brown who will be runnig her 6th Chicago Marathon in a row this Sunday. And this time around the track she’s going all out to bring attention to a rare neurological condition both her children have. Called Congenital Central Hypoventilation Syndrome (CCHS for short), her son and daughter are 2 of only 1200 people IN THE WORLD diagnosed with this genetic mutation.

I’ve reached out to Laura to see if she’d be open to being interviewed, but for your convenience I’ve embedded the original TV segment of her story from CBS Chicago (Channel 2 on most televisions) below.

Leave questions you’d like me to ask Laura in the comments section below this blog article.

Check out the GoFundMe Laura has established for the CCHS Family Network: 2022 Chicago Marathon- 26.2 for the CCHS Warriors

PALOS HILLS, Ill. (CBS) — On Sunday, 40,000 runners will weave through the city for the Bank of America Chicago Marathon.

Laura Brown, a Tinley Park mom and English teacher at Amos Alonzo Stagg High School in Palos Hills, is going the distance for two very special spectators – her children. She is seeking to raise awareness about a neurological disorder they both have.

CBS 2’s Sabrina Franza talked with Brown on Thursday. Brown said running a marathon started as a bucket list item.

“One and done, as they say,” she said.

That was in 2012. Now, a decade later, she is following a 20-week training program and lacing up to do it all again, and this won’t only be the second time.

“This weekend will be my sixth time running specifically the Chicago Marathon,” Brown said.

The reason why Brown runs the marathon is about more than a medal.

“Both of my children have a very rare medical condition called CCHS, which stands for congenital central hypoventilation syndrome,” she said.

Brown’s son Robbie is 7, and her daughter Josie is 5. They are two out of just 1,200 people in the world diagnosed with the genetic condition.

“When they fall asleep, their brain stops sending a signal to the respiratory drive to breathe properly.”

Both kids can only sleep with a BPAP machine – a type of ventilator.

“We can’t let them go to bed at night without being hooked up, as we say,” Brown said.

The condition is so rare that Brown said funding for medical research can sometimes be hard to come by. That is why she is running 26.2 miles for the sixth time.

“I like to think that even though this has affected us so personally, there is a purpose for us to be able to bring awareness to this cause,” Brown said.

Brown’s biggest fans have taken their diagnoses in stride. Their names are etched into mom’s laces.

Come Sunday, Robbie, Josie, and Laura Brown’s husband, Jeff, will be cheering her on. What is less clear is who will be most proud at the finish line.

“I don’t know how many adults can say that a 7-year-old and a 5-year-old are their hero, but my kids are absolutely my heroes,” Brown said.

A GoFundMe page has been set up to help raise money to support the CCHS Family Network. You can find it at this link: 2022 Chicago Marathon- 26.2 for the CCHS Warriors

SABRINA FRANZA Laura Brown runs Chicago Marathon for her children, both of whom have rare medical condition via CBS Chicago
© 2022 CBS Broadcasting Inc. All Rights Reserved.

0 comments

XHTML: You can use these tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>