A Southern Illinois father plans to run 150 miles in five days to raise awareness for a rare disease his daughter is suffering from.
Bill Babiarz will begin his journey Wednesday in Fulton, Ill. and will continue running across Illinois for four days until he reaches Chicago’s Buckingham Fountain.
Babiarz hopes his run will raise awareness for Rett Syndrome, a rare and physically disabling disorder that has left his 5-year-old daughter unable to walk, talk and use her hands.
Babiarz, who will be carrying a flag for the International Rett Syndrome Foundation, will make overnight stops in Sterling, Rochelle, Elburn and Wheaton.
He hopes to raise funds and awareness for Rett Syndrome ahead of their annual event, Cammy Can’s Cinderella Story, set for March 22 at Sidebar in Chicago.
Cameron “Cammy Can” Babiarz was diagnosed with Rett Syndrome at 20 months old. Her family says she understands everything but “is trapped in her body and unable to express her thoughts.”
Officials say the disease affects the same number of people as cystic fibrosis, Huntington’s and ALS.
The young girl’s family said “Cammy Can” is ambitious and is “a very happy and social little girl.”
“We would like to remind people that immobility does not mean they do not have the desire or the will to be independent,” said her moth, Jackie Babiarz.
The family hopes Babiarz’s run will help promote awareness of the disease and raise funds to further research.
“I run in hopes that one day, Cammy will run alongside me,” said Babiarz. “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.”