For many parents of a child with Down syndrome, the diagnosis can be an isolating and overwhelming experience. “My first reaction was, ‘How am I going to take care of my child? How am I going to protect her?’” says Tracy Nixon, whose daughter Laura, now 7, was diagnosed with Down syndrome at birth in 2003.  

Because the Nixons had decided not to do prenatal testing, the diagnosis came as a surprise, and they found themselves scrambling to learn about Down syndrome and the resources available to them. “I probably didn’t sleep at all the first six months—I spent the entire time scouring the internet,” says Nixon, who is a graduate of Columbia Business School and a former executive at Goldman Sachs. 

In September of 2004, Nixon met Debbie Morris, a fellow New Yorker whose daughter Sophia, only a year younger than Laura, also had Down syndrome. “When Sophia was born, it was definitely a shock to my husband and me,” says Morris, who is a senior vice president at Chartis Insurance. “But luckily I was connected with Tracy the third day after Sophia was born, and she was a tremendous help.” 

 Beyond their supportive friendship, Nixon and Morris became very interested in fostering a more cohesive community for all local families with children with Down syndrome. In their experience, the informal network of social service agencies, schools, and websites for families with children with Down syndrome—or any other special need for that matter—can be helpful but patchy and porous. And parents who don’t have either the financial resources or the time to properly navigate it can lose out on identifying vital services for their child and connecting with other families facing similar challenges.  

That’s why Nixon and Morris are spearheading the effort to bring a remarkable institution called GiGi’s Playhouse to New York City.

 A Down syndrome awareness and education center, GiGi’s started in 2003 in the Chicago of suburb of Hoffman Estates and is now in seven cities around the country. Its founder, Nancy Gianni, was inspired by her daughter, GiGi.

“I promised I would make the world a more accepting place for her,” Gianni writes on the GiGi’s Playhouse website [gigisplayhouse.org]. “I remember my first support group meeting—we were in the corner of a sterile room at the hospital. I just keep thinking, ‘Why isn’t there a place for us?’ That is what propelled me to create a place where families could come for resources and networking, where kids with Down syndrome could be the leaders, and where we could celebrate our diagnosis.”

In May of 2009, Nixon and Morris flew to visit GiGi’s Playhouse’s flagship location in Hoffman Estates, Illinois. The first thing that struck them was its exterior, which showcased beautiful professional photos of children with Down syndrome. The inside was equally colorful and welcoming, with fairytale inspired-murals and children’s artwork adorning the walls, and books, toys, games and other interactive projects spread throughout the space. The playhouse also featured a cozy, living room area for the parents, which overlooked the children’s play space.

“They had a terrific format,” remembers Nixon. “The kids were playing and there were volunteers facilitating play, and the parents were bonding and exchanging resources,” she says. “We were all together just celebrating our children.”

“It was just full of joy, light and happiness,” agrees Morris. “As soon as we got there, I thought, ‘We have to bring this to New York.’”

 As the president and vice president respectively of GiGi’s New York City, Nixon and Morris are currently they’re in the in the process of finding a location, looking for about 1500 to 2000 square feet of ground floor, storefront space easily accessible by public transit. “Basically, the most expensive real estate in New York City,” Nixon says with a laugh. “But the whole point of GiGi’s is to celebrate this diagnosis and be a visible part of the community, and we can’t do that from the eighth floor of an office building.”

 Like at all GiGi’s Playhouses, the New York center will offer programming for children and parents, ranging from pre-natal diagnosis support to classes to help children crawl and walk, to mixers and movie nights for tweens and teens. All of the programming will be free, with the exception of the math and literacy tutoring programs, for which there will be a nominal fee to cover materials. 

“This is a real resource—anyone can come here and participate,” says Nixon.

“GiGi’s doesn’t turn away anyone. If someone with autism walks in, Cerebral Palsy—if someone is disabled in any way, it’s fine,” Morris agrees. “It’s not only awareness, it’s acceptance.”

For Nixon and Morris, one of GiGi’s greatest attributes is that it offers a palpable sense of community to children who otherwise might not have it.

“In the early years, most children don’t distinguish themselves from another child, but they do when they get to middle school,” says Nixon. “So when children with Down syndrome start to lose some of the closeness they have with their typically developing peers, if they have a strong community of their own, there’s not this sense of loss. Instead, they can say, ‘I’ve got all these friends who are just like me.’”

And another wonderful outcome, according to parents from a variety of GiGi’s Playhouses, is that the educational programs give children a tremendous academic boost. “Kids with Down syndrome are visual learners who respond well to repetition, so the more exposure they have to the subject matter, the better off they are,” says Nixon. “So the intangible support helps with children’s confidence, and the tangible support helps them in school.”

 While GiGi’s Playhouse New York City is already generating a lot of buzz among city families, the organization is still in great need of contributions of all kinds, from play volunteers to administrative support to financial donations, as well as physical items like toys, office materials and play materials. “We need all skills; no one [who wants to help] will be turned away.” 

“We have already had tons of support in terms of how people want to contribute, it’s really a community effort and it will take the community to build it,” says Morris. “I keep saying, GiGi’s is going to rock New York, and I believe it.”

For more information about GiGi’s Playhouse, visit gigisplayhouse.org.

Photo of play group: provided by GiGi's Playhouse Hoffman Estates. Photo of Nixon, Morris and their daughters by Andrew Schwartz.