The Good Fight

The Mom With A Mission To Help Families With Down Syndrome

Roughly one in every 700 babies born in the United States has Down Syndrome. This mom is determined to help those children reach their full potential.

In 2002, when Nancy Gianni gave birth to her youngest child GiGi, the medical team treated her like life as she knew it was over. “They put me in a private room and kept sending in the clergy,” Gianni says. “‘Is she dying; is there something more you’re not telling me?’ I asked. No one would look me in the eye anymore.”

GiGi was born with two holes in her heart and Down syndrome; both were a surprise. “It wasn’t until I took her home that I really got to understand her and see that she was so much more than this diagnosis,” Gianni says. “When you have a typical kid, they don’t tell you how they might have a learning disability or they might get cancer, but when you have a kid with Down [syndrome], you only hear the negative.”

Gianni, who lives in Barrington, Illinois, left a job in ad sales when her oldest son was born. After GiGi’s birth, Gianni concocted an idea to challenge people’s perceptions of Down syndrome and give families a place to see their child’s full potential.

Nancy Gianni and her daughter, GiGi.

Gianni envisioned a place where children with Down syndrome could get educational and therapeutic programs tailored to their needs. A place where families with Down syndrome children would feel welcomed. Skeptics suggested she focus on her own child, but Gianni persisted. “I could have put all my energy into her but that’s not going change the world’s perception,” she says. “We needed to change perception for all individuals with Down syndrome.”

In fact, Gianni says the idea had been gestating from the moment GiGi was conceived. Although she did not know her child would have Down syndrome, Gianni found herself taking an early stand during pregnancy when other people used the R-word. “I remember being so excited and feeling like he or she was already making me a better person, making me stand up for people,” she says.

She opened the first location of GiGi’s Playhouse Down Syndrome Achievement Centers in Hoffman Estates, Illinois in 2003 with an all-volunteer staff. Setting up shop wasn’t easy but fortunately Gianni found others who believed in her mission.

Initially, explaining her plan for a center for people with Down syndrome seemed to set off alarm bells for landlords and others. Gianni called her insurance agent and he was out of town, so she spoke to someone else. “I want to open this place for people with special needs and have different programs for them,” she told him. Two seconds later, he said, “I’ve got a 16-year old with Down syndrome; will there be something there for him?” He made sure she got the insurance she needed. 

GiGi’s Playhouse offers families around the country a Down syndrome friendly place for activity and support.

Each year, GiGi’s Playhouse offers 50,000 sessions of completely free programs for people of all ages, whether they have a diagnosis or not. For instance, Language, Music N’ Our Peeps (LMNOP) classes use music and dance to teach infants and families basic sign language.

Melissa Ciraulo, a mother of three living in the suburbs of Chicago, took her three-year-old son Peter to this class. “Since attending LMNOP, he’s using more words, learned to sign more and trying to verbalize,” she says. “Whether it makes to someone else, it makes sense to us. He’s started him to understand what is going to be expected of him in preschool.” She’s also taken her three kids to open play and attended some of the seminars for parents.

School-age kids and teens can participate in cooking, club, karate, drama troupe or literacy training, while young adults in GiGi University complete an eight-week program learning confidence, career skills and wellness. They then go on to intern at GiGi’s Playhouse Store, Hugs + Mugs.  

For GiGi Gianni, “the literacy and speech programs are my favorite, but I love the GiGi Fit workouts and hanging out with my friends.” Fitness programs are especially important for people with Down syndrome since they’re often born with low muscle tone (hypotonia). Because of that, GiGi makes sure to stay in shape by taking dance classes, as well as being a member of her school’s cheerleader squad. 

Nancy Gianni says being an ambassador for GiGi’s Playhouse has given her daughter tremendous self-assurance. On a recent trip to a Playhouse opening in Raleigh, North Carolina, Gianni noticed that GiGi “walks through the airport with such confidence. She just gave a speech [that she’d written] in front of a thousand people.”

GiGi Chianni aims to be a leader and role model, not just to kids with Down syndrome, but to everyone.

GiGi Gianni says of her ambassador role: “I want to be a leader and help people and to inspire people to be better.”

Ciraulo believes GiGi’s Playhouse has had a positive impact on her entire family. “To be able to go somewhere and be surrounded with people who’ve gone through the same things as well as a lot of the same joys, it’s heart-warming and a sense of relief,” she says.

GiGi’s Playhouse now has 31 locations across the United States and Mexico, with hundreds more communities asking for their own Playhouse. Gianni hopes to have one in every major metro market by 2021 and plans to offer some online programming for families outside those areas.

“As soon as we opened that [first] one, we had all these inquiries,” Gianni says. To help GiGi’s scale, Gianni added paid employees and had an operating agreement and licensing agreement created for new locations, which operate as their own individual LLC under the same nonprofit. “They’re responsible for their own fundraising, but we give them all the tools that they need,” Gianni says.

GiGi’s Playhouses are entirely donor-supported. “We don’t use any government or state funding,” Gianni explains. “It’s not dependable. It would be devastating to have to pull programs. You can’t take this away from a family once they have it.”

Gianni says this donor-based model has helped make GiGi’s Playhouse sustainable. “I think we can equate our longevity to that from the beginning,” she says. “I’ve always had to be scrappy.”

Unlike the grave predictions of the medical team that delivered GiGi, Gianni and her daughter have thrived in their roles as chief belief officer and ambassador, respectively. “If you look at my life, it looks pretty good,” Gianni says.