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Helping those with Down syndrome reach their highest potential

After unexpectedly finding out that her daughter GiGi was born with Down syndrome, Nancy Gianni created a place where kids with her condition could find their potential: GiGi's Playhouse. NBC's Kate Snow reports.

By Kate Snow and Wonbo Woo, NBC News

Follow Nancy Gianni around for a day or two and the first thing you’ll feel is tired. She walks fast. She talks fast. And she is very much on a mission.

“I want to show people the beauty and potential in our kids,” she explains. “Let people understand that they are so much more than a diagnosis.”

At the new flagship location of GiGi’s Playhouse, a 10,000 square foot “achievement center” for people with Down syndrome, Gianni greets parents and children with unbridled enthusiasm.

“Hey, Sistah!” she calls out to one student.

“Are you a star?” she asks another, pointing to the sequined star on her T-shirt.

And everyone gets a hug. 

It’s a community Gianni built from the ground up, inspired by the birth of her own daughter, GiGi, now 11 years old.

Smart, self-assured and sassy (according to Gianni), GiGi loves to sing and dance and shares an office with her mom at GiGi’s Playhouse, where she writes thank you notes to donors.

Seeing the two of them together, it is hard to believe Gianni was ever afraid of her daughter’s Down syndrome. But she took her cue from her doctors. She said her obstetrician-gynecologist looked scared as he delivered the news.

“They said 'You know, we saw some soft markers of Down syndrome,' and just like at that point, like everything had stopped in my world. I don't remember anything else that they were saying.”

The nurses stopped making eye contact, she said, and it seemed as though the doctors didn't know what to say. Gianni says she was overcome with fear, but when she and her husband, Paul, brought GiGi home, things began to change.

“My other kids were so excited to see her because they didn't see her as a diagnosis. They just knew that they had a new baby sister. I wasn't going to let them see my fear,” she said. “If I was going to take this diagnosis and feel sorry for myself, or feel sorry for her, they would treat her that same way.  And I didn't want that for her, and I didn't want that for our family.”

And so she started gathering information and marshaling support for what would become GiGi’s Playhouse.

“I wanted to walk, have them walk in somewhere where they feel celebration. Where they feel the warmth, where they feel the love,” said Gianni. “I wanted them to be able to just walk in and know they belonged.”

And it has worked. The organization has been so successful that they’ve expanded, with 16 locations across the United States and Mexico, and six more set to open in 2014.

To learn more about GiGi's Playhouse, please visit the website http://gigisplayhouse.org/  They can also be reached on Facebook and Twitter

GiGi’s Playhouse offers free services to people with Down syndrome – from private tutoring to art and music and life skills classes for young adults.

A program called LMNOP (Language, Music, ‘N Our Peeps) uses song and dance to teach the youngest students language and movement. It looks like any preschool class, but the skills they teach are even more important.

“Kids with Down syndrome have low muscle tone,” explained Gianni. “That's what we're fighting all the time, which is why all of our programs are therapeutic in nature.”

So when a 4-year-old named Katelyn blows bubbles, she’s doing more than lighting up the room with her smile. She is strengthening facial muscles.

“Our kids have a diagnosis they wear on their face. So that's the first barrier for children to get over,” Katelyn's mother, Kristin Malek, explained.

She says she is grateful to Gianni for creating a place where Katelyn can succeed. “She's changing lives day by day. And making things happen and swinging doors open for all of us just to walk through.”

The new facility also features a store called “Hugs and Mugs,” that will be up and running in January 2014. Students will make the mugs themselves and also staff the store, teaching them occupational skills that will help them live independently.

“I can sell mugs. I can do my drawings. I can do anything,” said Christine Maxwell, one of the program’s stars. She lives on her own, has worked for more than a decade at her local movie theater, and serves as a mentor to other students.

Nightly News' National Correspondent Kate Snow first learned about GiGi’s Playhouse through her family. Her sister-in-law, Kiera, was born 32 years ago with Down syndrome, but at the time, there was nothing quite like Gianni's organization. 

“I wished I had had more support,” said Kiera's mom, Kathy, who lives near GiGi’s Playhouse, and has participated in the group’s annual 5K fundraising walks with her daughter. “I know people who have been here from day one and that’s when you need it the most.”

And Kiera had a question of her own for her mom. “What did you think of me when I came into your world?” she asked.

“When you came into my world? Well I didn't know a whole lot yet, so it was unknown and you kind of are fearful of things you don't know,” said Kathy. “This is what this place helps people with. You come here and you're not alone anymore. You're with other moms and dads and they help you and your child is special.”

And that, says Gianni, is the point.

“I think the most important thing that people need to understand about Down syndrome is the potential in that person,” she said. “That's what keeps me going everyday. I can look into the eyes of -- whether it be a child or one of our adults with Down syndrome and I see nothing but untapped potential.”