CHICAGO — Cameron Babiarz has lived an amazing seven-plus years, even though she can't walk, talk or use her hands.
That's all despite being diagnosed with Rett syndrome — a rare developmental disorder discovered in 1954 — which prevents Cameron from speaking, walking or using her hands.
"While Rett syndrome has taken away Cammy's ability to walk, talk and use her hands, it has not taken away her intelligence or her desire to communicate," said Cameron's father, Bill.
Bill Babiarz, who works Downtown at IMC Financial, and his wife, Jackie, are hosting an upcoming fundraiser for Cameron — known as "Cammy Can" on Facebook and Twitter — at Sidebar Grille, 221 N. LaSalle St. Last year, the fundraiser brought in $116,000, and the Babiarzes, who have the Blackhawks as one of the main sponsors, hope to top that in 2017.
All the money goes to Rettsyndrome.org, which funded a 68-clinical drug trial at Boston Children's Hospital in which Cameron participated.
"People are really excited to meet the little girl they are rooting for, and Cammy gets to thank them personally," Jackie Babiarz said.
Rett syndrome has been reversed in tests on mice, and the Babiarzes hope a cure is found for Cameron and others by the time she turns 21. Cameron's eighth birthday is March 10.
"We know that within 13 years there will be a cure," Jackie Babiarz said. "We'll be celebrating Cammy's 21st birthday at Sidebar with all our friends while Cammy is ordering her own beer and drinking it herself."
Cameron first gained fame when she kissed the Stanley Cup at John McDonough's day with the trophy in Edison Park in 2013. Two years later, she again pecked the famous chalice and also skated with Keith in a "#whatsyourgoal" commercial that had more than 25 million Facebook views. In 2016, she got to "choke out" CM Punk at the UFC Gym in South Loop in addition to hanging out with Bocelli after one of his shows at Allstate Arena.
"I am always amazed at the good things that have come from Rett syndrome," Bill Babiarz said. "There are many challenges and tough times, but to see all the people touched by Cammy and wanting to help is amazing. Rett syndrome has helped us to see the absolute best in people."
For more information on the fundraiser, or to donate, click here.
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