GiGi’s Playhouse: Raising Awareness About Down Syndrome

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When Ketly and Derek Diehl found out they were expecting their first child, they couldn’t have been happier.

“Just like I think any first time parents we were anticipating and idealizing kind of what our first child would be like,” Ketley says.

After a routine pregnancy and long labor, the Diehl’s were anxious to meet their son for the first time. When he was born, however, the atmosphere in the room was not jubilant like they were expecting.

“We could tell immediately just with some of the doctors in the room, just kind of reading their body language and their eye contact and what not that there was something different, there was something going on that maybe shouldn’t be,” Derek says.

When doctors present baby Carson to his parents, they immediately recognized some tell-tale characteristics. Carson had Down syndrome.

“The way we like to describe it to people is we mourned for about an hour because I think …. we had this ideal of what having our child would be like and so I think we mourned that death of a dream perhaps,” Ketly says. “Literally after an hour both of us just kind of wiped our faces and we were like you know what? This is our son.”

As Carson grew, Ketly and Derek quickly realized their sons many talents and gifts. Whether he’s dancing to his uncle’s music, playing with his brother Cam, or offering a hug to whoever is around, Carson lights up the faces of anyone who is around.

“We kind of have a joke that the extra chromosome in him is just the chromosome of love,” Derek says.

Derek and Ketly wanted to find a place that embrace their son just as he embraces all those he comes in contact with. Their search ended when they came across GiGi’s Playhouse, a national Down syndrome awareness center that got it’s start right here in the Windy City.

The Lincoln Park location serves 220 families and estimates that 500 individuals with Down syndrome live within a 5-mile radius of Playhouse. Their goal is to reach as many people as possible.

“It’s important that people know that individuals with Down syndrome can achieve great things and that they have incredible gifts to offer their community,” Amanda Hillmann, President of Board of Directors for GiGi’s Playhouse Chicago says. “What we do here is we celebrate those people and create an opportunity or the tools so that they can realize their greatest potential available and be productive members of their community.”

GiGi’s Playhouse is free of charge and run almost entirely by volunteers. Their literacy program, social groups, and One Million Voices campaign have raised awareness and provided support for people whose lives have been touched by Down syndrome.

“The biggest benefit to us would be just the feeling of you’re all a big family and we all understand each other,” Ketly says. “You don’t really have to communicate, there’s just that natural sense of I understand you.”



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