Mequon couple paves way for new nonprofit
New committee works to bring Down syndrome Awareness Center to Milwaukee
Mequon — Two-year-old PJ Kocab sat in the middle of his parents living room in Mequon last week with toys scattered around him. Occasionally, three of his older brothers would get his attention and he would smile. The family St. Bernard stretched out lazily in front of PJ's parents, Lisa and David.
They are a typical family with one unique characteristic. PJ was born with Down syndrome. His diagnosis was scary at first, but the family is hoping to show others it doesn't have to be.
When Lisa and David were given the Down syndrome diagnosis after PJ was born at Aurora Medical Center in Grafton, the Mequon couple was inundated with information. Information they say was clinical in nature, but didn't really tell them what life with a child with Down syndrome is really like. Lisa and David want to change that. They are bringing Gigi's Playhouse Down syndrome Awareness Center to the Milwaukee area to fill the gaps in education, awareness and programming for children and adults with Down syndrome.
The nonprofit organization was started in Chicago. There are now 15 Gigi's Playhouse centers around the U.S. and one in Mexico. The Kocabs are hoping the Milwaukee area becomes home to the 16th center. Gigi's Playhouse offers one-on-one math and reading tutoring, as well as support for families. The educational and therapeutic programs were developed by licensed teachers and therapists. They are free of charge.
A blessing in disguise
Lisa and David, along with their four children, moved to the Milwaukee area from a Detroit suburb four years ago for David's job at Johnson Controls. They chose to live in Mequon because one of their son's has a learning disability and they wanted to find a school district with a good special education program. They found that the Mequon-Thiensville School District best met their needs.
Two years later, PJ was born.
The diagnosis shook the Kocabs — at first.
"You have some dark moments. 'What does this mean? Oh my gosh can my marriage survive this? How will my other kids handle this?' It's a life altering moment," Lisa said. "You grieve the children you thought you were going to have, the life you thought you were going to have. Then, you realize it's an incredible blessing and you realize he's as exceptional as all of his brothers."
After his birth, Down syndrome became an after thought when PJ was transferred to Children's Hospital for emergency surgery. An infection nearly took his life and he was kept in an incubator for two months.
The Mequon community, Lisa said, rallied around them in a massive showing of support. On May 8, 2011, Mother's Day, PJ came home from the hospital.
"I would never choose not to have him," Lisa said. "He's been such as blessing to our family."
Searching for resources
When the Kocabs were able to bring PJ home and surround him by family, they began coming to grips with PJ's diagnosis. Lisa took to researching the syndrome. She said she soon realized programs for children ages birth to 3-years-old are few and far between.
"In Michigan, you go to an early childhood center, get services there and meet other families," Lisa said. "Here it's isolated. It's like you're on this island and you feel like you're the only one going through it."
Gigi's Playhouse can connect families and fill the gaps by providing more services to individuals with Down syndrome. Gigi's will offer a six-to-seven day a week center, run by volunteers and paid for through grants and donations.
It will be a place families can find guidance at any moment, Lisa said. She said Gigi's focuses on what people with Down syndrome can do, not what they can't do. Its goal is to break down the stigmas surrounding Down syndrome by creating a world where those individuals are accepted.
"It provides the services so these kids can succeed in a full inclusion setting and so adults can succeed in the work force in a full inclusion setting," Lisa said.
In May, Lisa sought help from neighbors and friends Dan and Kathleen Oberneder to jump start her mission. Three weeks before PJ was born, the Oberneders gave birth to a little girl named Emily. Emily was born with Down syndrome, too.
Paving the way
Together, they began making progress. In June, Kathleen Oberneder and Lisa toured the Gigi's Playhouse headquarters in Chicago and wrote a business plan. A 15-person committee has been formed made up of six parents who have children with Down syndrome, and professionals from around the area to implement Gigi's Playhouse in Milwaukee.
Fundraising is under way and the committee is on the hunt to find a suitable and central location for the center with the goal of opening in September 2014. They have partnered with Concordia University so special education students can work their clinical hours at the center helping teach the programs.
An ideal location is somewhere with high visibility and high traffic, David said. Also, somewhere close to a bus station so adults with Down syndrome have easy access.
"High traffic, high visibility help drive the awareness," David said. "We want to be out in the open, we want people to see it and drive by every day and get accustomed to it."
To donate to the cause, contact Lisa at firstname.lastname@example.org. For information about the organization, visit gigisplayhouse.org. Gigi's Playhouse Milwaukee can also be found on Facebook.
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