Father Who Ran Across Ill. for Daughter with Disease: "It Was Worth It"

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    NEWSLETTERS

    Bill Babiarz ran from the Mississippi River to Buckingham Fountain to raise money and awareness about Rett Syndrome, the rare neurological disorder his daughter is fighting. (Published Sunday, Mar 23, 2014)

    A Southern Illinois father who ran 150 miles in five days to raise awareness for a rare disease his daughter is suffering from said the run and following fundraising event were a "huge success."

    Bill Babiarz began his journey in Fulton, Ill. and continued running across Illinois for four days until he reached Chicago’s Buckingham Fountain.

    "My feet are a little swollen," he said after the run. "I'm not fitting into my shoes very well."

    Babiarz said he hoped the run would raise awareness for Rett Syndrome, a rare and physically disabling disorder that has left his 5-year-old duaghter unable to walk, talk and use her hands.

    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 family hopes Babiarz’s run will help promote awareness of the disease and raise funds to further research.

    Babiarz ran the entire journey sporting a purple mohawk. He challenged supporters to raise $10,000 in 10 days, and said if they did, he would run with a purple mohawk. Purple is the color of Rett Syndrome awareness, he said.

    "It was worth the haircut for sure," Babiarz said.

    At the end of his journey, Babiarz's daughter and wife stood at the finish line wearing customized superhero capes.

    He broke through the ribbon and immediately embraced them both.

    The run was a precursor to a Saturday fundraising event at Chicago's Sidebar Grille, where Babiarz said more than 200 supporters raised an estimated $90,000 for Rett Syndrome research.

    "It was worth every minute of it," he said.

    Babiarz said he hopes to continue raising awareness until a cure for Rett Syndrome is found.

    "Awareness is the biggest part because no one knows what it is," he said. "Once people meet [Cammy] they love to come out and support her."