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'Wheels on the Runway' to benefit local family dealing with CP

By Briana Barker Reporter Published: May 3, 2017 12:00 AM
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SAGAMORE HILLS -- Kim and Joe Bosze have teamed up with United Cerebral Palsy of Greater Cleveland in order to get their 2-year-old daughter, Emersyn, intensive therapy and are looking to do the same for the oldest son Porter.

Porter, 8, was diagnosed at 8 months old with a condition called Polymicrogyria, or PMG, an abnormal development of the brain in which the brain develops too many folds, and the folds are unusually small. It is a form of cerebral palsy. According to the Conductive Learning Center in Michigan's website, more than 100,000 preschool children, 300,000 schoolage children and 800,000 adults live with cerebral palsy in the United States.

Joe said Porter's condition is fairly mild. Porter is a second-grader at Northfield Elementary and is attending regular classes with an aide. Porter's development has always lagged slightly behind kids his age, but the older he gets, the faster other kids develop and the gap between him and his peers grows, Kim said.

"We don't know where he will be when he gets older so that is the scary part, but he is doing really well," she said.

Joe said he and Kim noticed Porter's left hand wasn't working correctly. Joe's cousin happened to be a nurse and suggested they take Porter to the doctor because she recognized the sign of cerebral palsy. Kim said Porter had an MRI done and that was how he was diagnosed.

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However, their 2-year-old daughter Emersyn has also been diagnosed with a much more severe form of the condition.

Kim and Joe have a middle son, Benson, 5, who has not shown any signs that he has PMG.

When Emersyn was around 6 months, they began taking her to doctors who told the Boszes they did not believe Emersyn had PMG and tested her for several other conditions. After an MRI was finally conducted, the doctors came to the conclusion that she indeed had a severe form of PMG, with the front half of her brain from temple to temple affected.

Kim then saw a friend's Facebook post about a therapy center in Grand Rapids, Michigan, and contacted her friend, Jen Schubert, for more details.

"It's an intensive therapy program at the Conductive Learning Center are four-week sessions," Kim said. "Six months ago she could barely sit up on her own, but now she can sit for up to 30 minutes at a time."

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"The transformation has been huge," Kim said. "She wasn't even sitting up as of her second birthday and now she is well on her way to walking."

Joe said Porter is able to walk and talk, though he doesn't always speak clearly, while Emersyn needs help with even the basics.

"Emersyn can't feed herself, she can't stand, she can't walk, she doesn't talk but she's got the most beautiful smile," Joe said. "She smiles a lot."

Kim agreed and added the therapy helps Emersyn realize she can do things on her own.

"It's helped her learn how to use her body," she said. "Mentally I feel like she's there she just has so many roadblocks. She's not able to walk or move the way she wants to or to talk and express the way she feels so she cried a lot, but now I feel like since we started this therapy she is a much happier baby."

However the therapy center is not covered by insurance and is very expensive. In an effort to keep Emersyn's progression and get their son Porter enrolled in the program this summer, the family has partnered with United Cerebral Palsy of Greater Cleveland to hold a fundraiser called Wheels on the Runway at the Twinsburg Hilton Garden Inn May 6 starting at 11 a.m.

The event includes a Mother's Day brunch and fashion show during which 45 kids with disabilities are scheduled to walk in the show.

Funds raised at Wheels on the Runway will not only help the Boszes but many other children and families from United Cerebral Palsy as well.

Tickets are $35, and can be purchased by calling Amy Miklos, chair of the event, at 216-218-1141 or emailing wheelsontherunway@gmail.com. The event is expected to sell out.

Anyone interested in donating can do so directly through PayPal. There is a link on their Facebook page Wheels to Run #EmpowerBosze. Donations are 100 percent tax deductible.

Briana Barker: 330-541-9432

bbarker@recordpub.com


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