FULTON, Ill. — A Wheaton, Ill., man will set off from Fulton soon for a 150 mile run for Rett Syndrome.
Bill Babiarz’s daughter Cameron (Cammy) was 18 months old when she started displaying signs of the rare condition, which she was diagnosed with at 20 months old.
Since Cammy’s diagnosis in 2011, Babiarz and his wife, Jackie, have worked to raise money for the International Rett Syndrome Foundation. Each year, they hold the Cammy Can’s Cinderella Story event, which raised more than $40,000 for the foundation. This year’s event is set for March 22 at Sidebar in downtown Chicago.
To gain more attention for the syndrome and the IRSF, Babiarz decided he would run 150 miles across the state, starting on March 12 in Fulton.
“I run in hopes that one day, Cammy will run along side me,” Babiarz said. “The long distance is symbolic of how difficult it is for Cammy to take just one step, something almost all of us take for granted.”
Babiarz pulled out a map one day and looked for a “substantial town that was straight west from Chicago.” He found that Fulton was a perfect starting point.
According to the International Rett Syndrome Foundation, the condition is a neurological or developmental disorder causing the loss of speech, hand function and other acquired skills. Children diagnosed with it —typically girls — seem to develop normally until 6 to 18 months of life, with a period of regression following, according to the IRSF.
“It’s kind of like autism, cerebral palsy and epilepsy all rolled into one,” Babiarz said. “It can be devastating.”
Cammy, 4, has never walked and is unable to talk and use her hands. She also experiences seizures and breathing problems. Symptoms of Rett Syndrome also can include compulsive hand movements, severe digestive problems, orthopedic abnormalities, disrupted sleep patterns, extreme anxiety and impaired cardiac and circulatory functions.
During his journey, Babiarz will carry the IRSF flag. He will make overnight stops in Sterling, Ill., Rochelle, Ill., Ebern, Ill. and Wheaton, Ill. The journey will conclude four days after he leaves Fulton, at the Buckingham Fountain in Chicago.
For more information about his run, visit www.rettsyndrome.org/special-events/cammy or the “Cammy Can” and “Run Across Illinois” Facebook pages.