That Time I Ran the Chicago Marathon to Raise Awareness of Rett Syndrome

After her daughter's diagnosis, columnist Jackie Babiarz took action

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by Jackie Babiarz |

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Each year, about 40,000 people train for the Chicago Marathon, one of the city’s most popular events. Following a rigorous training schedule for months to run 26.2 miles through Chicago’s amazing neighborhoods is a unique experience. It always intrigued me, but I didn’t think it was an experience I needed to feel fulfilled — until I saw the race as an opportunity to raise awareness of Rett syndrome and fundraise for the International Rett Syndrome Foundation (IRSF).

My daughter Cammy was diagnosed with Rett syndrome in January 2011 when she was just shy of 2 years old. The condition has taken away her abilities to walk, talk, and use her hands. After a long grieving process, I realized that raising funds and awareness were the only things we had control over when it came to Rett. I was determined to do whatever it took to help further research.

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On the Worst Day of My Life, People Were There to Support Me

Ten years ago, in October 2012, I was one of more than 37,000 people who ran that year’s marathon. I had three goals: First, I wanted the IRSF flag to be carried for all 26.2 miles. Second, I wanted to finish. Third, I wanted to cross the finish line with Cammy.

Family and friends signed up to run the marathon in Cammy’s honor. A few ran in the hopes of achieving their personal best, while the rest ran with me to do the race as a team. Along the route, more friends and family jumped in to run whatever distance they could to be part of this mission and take a turn carrying the IRSF flag. It was incredible to watch that flag fly for 26.2 miles, raising awareness.

A group of runners wearing hot pink shirts run through the streets of downtown Chicago as part of the 2012 Chicago Marathon. A woman on the left is carrying a large purple IRSF flag.

Cammy’s aunt, Erin Corrado, carries the IRSF flag for a couple of miles during the 2012 Chicago Marathon. (Courtesy of Jackie Babiarz)

Having injured my knee during training, I had to slow my speed to ensure I could complete the race. The outpouring of love and cheers from strangers along the route fueled me. My teammates running with me continually reminded me, “We run so Cammy can.”

With 0.2 miles left, I spotted my husband, Billy, holding Cammy on the sidelines. I burst into tears. He and Cammy jumped in the race to help me accomplish my final goal. The three of us crossed the finish line together, holding one another. While it seemed like I carried Cammy across the finish line, the truth is, she carried me.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.


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