Running across Illinois for a cure

By on March 26, 2014
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Photo: Bill Babiarz is running from west to east across the state to raise awareness and money for the fight against Rett Syndrome. Babiarz’s 4-year-old daughter Cammy suffers from the rare developmental disorder. Bill finished his Friday run at the Elburn Fire Station. Photo by Lynn Logan

Wheaton man stops in Elburn during cross-state run
ELBURN—When Bill Babiarz ran into downtown Elburn on March 14—his third stop on his 150-mile Run Across Illinois to raise funds for Rett Syndrome—his focus wasn’t on the blood blisters covering his toes or even the toenails he’d lost along the way.

The Wheaton, Ill., father was focused on his 5-year-old daughter, Cameron, who has Rett Syndrome and cannot walk, speak or control her hand movements.

Cammy was diagnosed with the rare neurodevelopmental disorder, which affects one of every 10,000 girls, three years ago. She was developing normally until she was 18 months old, when she began regressing and lost her language and motor skills, but Rett Syndrome hasn’t affected her mind. She now uses eye-tracking devices and buttons to communicate with her family and teachers.

Her father hopes that raising funds for research and increasing awareness of the disorder will help find a cure in Cammy’s lifetime. He sported a shirt—worn underneath a jacket on the chilly day—with the run’s motto: “I run so Cammy can.”

Bill began his run in Fulton, Ill., near the Mississippi River, and spent five days running east to finish at Buckingham Fountain in Chicago, near Lake Michigan. He ran to Sterling, Ill., on the first day and then Rochelle, Ill., on the second—running 68 miles—before setting out from Rochelle to Elburn on day three, a 32-mile journey, running down Keslinger Road for much of the way.

Several runners and bicyclists accompanied him for parts of his trip, including two friends who followed his entire 150-mile journey, Eric and Pamela Santa. Eric rode his bike alongside Bill, and Pamela drove the route, providing food and drinks to the runners and blocking traffic. Local and county police departments also provided a safety escort, including the Elburn Police Department.

Cammy joined him at several spots along the five-day journey, including the last half-mile of his trip to the day-three finish line at the Elburn Fire Station.

“I think she’s pretty excited,” Bill said. “I saw her once along the route today, and she was smiling and happy. My wife Jackie and Cammy met me at mile 22 today, just alongside the side of the road and said, ‘Hi,’ which gave me a little boost, and with about a half mile left, a friend of mine brought Cammy in a jogging stroller and we jogged the last half mile with her.”

Among the people waiting at the Elburn Fire Station for Bill and Cammy’s arrival was Jenny O’Brien, the owner of Dreams Dance Academy in La Fox. O’Brien had never met either before, but when she heard Cammy’s story, she wanted to do something to help—so she collected 15 pairs of legwarmers from her dance students to give to Cammy, who wears them to keep her legs warm while outside in her wheelchair or in her jogging stroller, and offered to host an adapted dance class for Cammy and her younger sister, Ryan.

“I waited there until (Bill) crossed the finish line, and it was so inspiring to see all that they are doing for their daughter and to see all the people that this little girl has touched,” O’Brien said. “It was the first time I had met Cammy, and she smiled when we gave her all the legwarmers and a little dance bag.”

Elburn was the first stop along the route where the runners saw other people, Bill said.

“Up until Elburn, we had pretty much only been through one town in the previous 90 miles, so it was nice to see family and friends and people cheering,” he said. “It was exciting and it was definitely a little boost.”

Bill’s run raised more than $60,000 for the International Rett Syndrome Foundation, which works to find a cure and to support families, with his Run Across Illinois. Hundreds of people sponsored his run and made donations, and New Balance Chicago provided athletic gear and shoes.

Last year, the Babiarzs raised $43,000 for the IRSF, but much of that money came from people within the Retts community. Bill knew that in order to bring in more money, he had to expand the circle of donors—and the only way to do that was to do something big and generate media attention.

“Our goal as a family is to contribute as much as possible so that a cure for Rett Syndrome can be found in a time frame where Cammy can take advantage of it, and we’re willing to do just about anything, so that’s how this came about,” Bill said.

Though Bill completed his run at Buckingham Fountain on March 16, he can still be sponsored through the IRSF website through Saturday, March 22. Donations go toward research for a cure and supporting families with Rett Syndrome. To become a sponsor, visit rettsyndrome.org/ILRUN/.