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Stanley Cup Experience Special for 4-Year-Old Girl With Rett Syndrome

By Justin Breen | August 8, 2013 6:36am
 Four-year-old Cammy Babiarz got the chance Saturday to touch the Stanley Cup when John McDonough brought the Cup to Edison Park.
Cammy Babiarz hangs with the Stanley Cup
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EDISON PARK — All summer, Jackie Babiarz wanted her 4-year-old daughter, Cammy, to feel like a kid.

Cammy suffers from a rare developmental disorder — Rett syndrome — which prevents her from speaking, walking or using her hands.

"We kind of get stuck doing the same things because she has so many therapy sessions," said Jackie, an Edgebrook native.

So, Jackie decided to create a 24-item bucket list for Cammy that "forced us to do some fun things this summer."

The agenda included activities like going to the beach, attending a concert, riding a train and visiting the library.

The toughest task was touching the Stanley Cup, which Cammy completed Saturday when Blackhawks CEO and President John McDonough brought Lord Stanley's chalice to Brooks Park in the Northwest Side's Edison Park neighborhood.

 Jackie Babiarz is shown with her 4-year-old daughter, Cammy, who recently got to touch the Stanley Cup.
Jackie Babiarz is shown with her 4-year-old daughter, Cammy, who recently got to touch the Stanley Cup.
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DNAinfo/Justin Breen

There, McDonough spent a few precious moments with Cammy — at one point kissing her on the forehead — as well as Jackie, her husband, Bill, and their youngest daughter, 2-year-old Ryan.

"He was so incredibly nice," Jackie said of McDonough, who grew up in Edison Park and graduated from St. Juliana School. "He spoke to Cammy the way you want everyone to speak to your daughter. He got down to her level so he could look in her eyes."

With her father's help and while sitting in her wheelchair, Cammy put her hands on the most famous trophy in sports. Sister Ryan dipped her hands into the top of the Cup because, according to Jackie, "She thought there would be a doughnut in there."

The Babiarzes, who met at the University of Illinois, lived in Bucktown before moving to west suburban Wheaton in 2010 so Cammy would have a backyard to play in. For the first 18 months of her life, Cammy was like any normal child, able to feed herself and say "mama, dada and babba."

But Rett Syndrome — which affects about 1 in 10,000 children, mostly girls — caused a massive, extremely quick regression. Girls affected by the syndrome can expect to live to middle age.

Cammy has full cognitive ability. At her home Wednesday, she smiled brightly when watching Destiny's Child perform "A New Way to Walk" and will.i.am sing "What I Am" on Sesame Street's "Singing with the Stars" on her iPad.

But she can't eat without assistance, and her only way of communicating is by using "Eye gaze," an eye-tracking device.

Jackie and Bill, an options trader Downtown, have been active fundraisers to find a cure for Rett syndrome, which was discovered in 1954. They started the "Cammy Can" Facebook page, which features Cammy's accomplishments and a pictures of celebrities, including Cubs pitcher Jeff Samardzija and Bears kicker Robbie Gould, holding a superhero-like logo featuring a cartoon version of the 4-year-old.

"All we ever hoped for was to spread awareness," Jackie said. "That's the only thing we have control over, to feel like we're doing what we can to help her."

They also made Facebook fans aware of Cammy's bucket list, and they've received some touching feedback.

One of the items was for Cammy to visit a museum, and Jackie's childhood friend from St. Mary of the Woods School, Katie Cosmano, bought the Babiarzes a family membership to the Shedd Aquarium for the year.

"The Babiarz family has been so busy creating awareness about Rett and fundraising for the Rett Foundation that I wanted to give something back that they could all enjoy, so I decided to send them a family membership to the Shedd rather than just a pass," said Cosmano, a DePaul University graduate and Roscoe Village resident.

To find the Stanley Cup, Jackie reached out to Cammy's Facebook followers to see where it would be throughout the summer.

The event at Brooks Park worked perfectly, and Jackie coordinated with Edison Park Chamber of Commerce Director Melissa Panizzi and the Blackhawks to make sure Cammy had her time with the trophy.

"As a close-knit community, we felt we had to help Cammy cross off an item on her bucket list and at the same time bring awareness to [Rett syndrome]," Panizzi said. "It was a wonderful moment seeing Cammy touch the Cup."

Of the 24 bucket list elements, Cammy has only four left to attain. One includes going to a baseball game, preferably at Wrigley Field.

Even if Cammy can't complete every goal, Jackie said the list has been a godsend for her daughter and her family.

"An amazing thing that has come from all of this is the amazing human spirit of people who want to help," she said. "I think it’s because they see Cammy, and they see that we’re a typical family and that could be their daughter.

"They've given us words of encouragement on a daily basis that help us so much."