NBN sat down with the "Chief Belief Officer" of Gigi's Playhouse and mother of Gigi, Nancy Gionni, to discuss how Gigi's Playhouse came to be and what's to come.
NBN: How did Gigi’s get started?
Nancy Gianni: It started after Gigi was born. We didn’t know she was going to have Down syndrome. It was a big celebration. Everyone was having a great time, gonna have a baby, and then everything kind of changed, everyone got really quiet. [The doctors] came in and said they suspected that Gigi had Down syndrome. Just the way we were treated was different. I wanted a private room from the beginning and didn’t get one and now they were like “put her in a private room” and the lights were dim and they kept sending in the clergy. I felt as if my life was over and I really didn’t know how I was going to go home and tell my kids what this was all about.
I am a really positive person and once I got home and saw who she was going to be and that she had the same potential as my other kids I wanted to take away that fear and just accentuate the positives when it comes to Down syndrome. I wanted other people to see the gift that they are and see their potential and take away a lot of that fear associated with Down syndrome. And that’s how it started!
NBN: What was it like when you found out you were going to be NUDM’s 2017 beneficiary?
Gianni: Oh my gosh. Crazy. It is something that I’ve wanted since I heard about it 10 years ago and never dreamed that it would be something we could ever do. We started applying for it, never ever thinking it would be a reality. It kind of happened the way Gigi’s Playhouse happened. With Gigi’s it’s one child, one diagnosis at a time. Whether I speak in front of one person or 1,000 people I’m always going to try to get that same message across and try to change the way people think. So, I think it just happens slow and methodically and then all of the sudden we finally got it. I don’t even know how we finally were chosen, but I think we had to prove ourselves over the years and we finally did. It was amazing. It was absolutely amazing.
NBN: How many locations are there of Gigi’s Playhouse?
Gianni: There are 31 locations across the country and in Mexico and then we have seven or eight more opening this year and then we’ve got over 200 inquiries to open worldwide. So, we have a model we use and they join the Gigi’s Playhouse model. There’s three phases. Some of them make it, some of them don’t and that’s why the mobile programming is going to be huge. So, for the places that can’t warrant a brick and mortar playhouse we’re going to have mobile programming. So, families are going to be able to get the Gigi’s Playhouse programming for free without actually having the brick and mortar location.
NBN: So, what is the money from DM funding? The mobile programming?
Gianni: The mobile programming is one of them, which is amazing and so needed for poverty stricken areas, rural areas, any area that can’t sustain a brick and mortar location. So, that is really huge to us.
It’s going to out speech program. Free speech therapy which is amazing. You see how our kids are. They all have so much to say, but their tongue is a muscle and to just do five syllables is something so hard for them. You can work out your triceps, you can work out your biceps, it’s hard to work out your tongue and be able to really articulate what you need to say so to be able to have the speech therapy is beyond huge. Communication is key. Some people think those who can’t communicate are less than others. They have so much to say, they just have low muscle tone. So, that’s such a huge piece.
Gigi Fit is huge because that’s a whole lifestyle. These programs are not only life changing for the child getting them, but also for their families. A diabetic needs insulin, our kids need fitness and they need therapy. 80% of our kids are obese, they have a lower metabolism. If you live with parents that don’t work out you’re not going to have that work ethic. Gigi Fit changes not only the person’s life who’s in it, but the families lives because it opens them up to be able to travel, to be able to do things they couldn’t do because their kids couldn’t keep up. People don’t understand, they can’t do stairs. What God gave all of us in our muscles, these kids have to teach their bodies to do. We had to teach crawling and walking and then she couldn’t jump. I was like "what do you mean you can’t jump?" She had to teach her body the mechanics of jumping. My kids everyday had to teach her how to go down and go up and it was literally weeks before she even saw air under her little feet. That little muscle tone just pushes you down. Gigi Fit is life changing. It’s going to allow a kindergartener be line leader. It’s going to allow him to keep up with him class. It’s going to allow a teenager make one of the teams in school. It’s just life changing in so many ways, but when those opportunities open up for the kids, the families’ lives open up. They’re able to do more. There’s just an empowerment. There’s not so much pressure put on them all the time to be doing these things for the kids.
I love all of the programs.
NBN: Is Gigi here?
Gianni: She is she has been texting me her outfits, letting me know what she’s going to wear.
NBN: Is she loving it? Is she dancing?
Nancy Gianni: Loving it. You know what I love about it? Last night, it was so awesome. She was with me at two in the morning, knowing why she was here. She totally knew why she was here, how appropriate she had to act and that you guys are fighting for her. They feel the acceptance. I think what’s really cool, and you guys probably haven’t even seen, that a lot of the babies who have been here are walking around with the headphones because of the sensory, but half the times they aren’t even wearing them. They’re not afraid. Most of that sensory stuff is a lot of fear and they’re not afraid. They feel the acceptance you guys are bringing. One of the girls, I wouldn’t say she’s nonverbal, but she doesn’t speak well, went home last night – and while she was here you almost wouldn’t thought she wasn’t enjoying herself – and she sent this beautiful text to her mom last night about what it meant to her to be here. I saw it on Facebook this morning and I was like “Oh my gosh, that was Rebecca. She knew.” As much as you don’t know if they’re getting it, they all know you’re fighting for them. They feel it. It’s so crazy. At every Gigi’s Playhouse opening Gigi and I go and she speaks at them. There are kids there that have so many issues, but when they come to a Gigi’s Playhouse opening…they feel acceptance and people just love them and accept them as they are. I’m watching these kids that have so many issues just walking into this room that’s so loud and they normally couldn’t handle and they’re feeling that love and acceptance and they’re just loving it. It’s so crazy. It’s like they’re walking into a Gigi’s Playhouse that’s full of acceptance. That’s what that tent is. It’s a feeling you guys made happen in that tent with all those people. It’s crazy. I’m so beyond proud. I’m texting my son who’s a sophomore at Kentucky like, “you can’t even imagine what’s happening over here.” It’s awesome.
We are so grateful. We’re spending the money of programs that are going to serve people for years and years to come. Spending the money on pure acceptance that’s happening here. Every graduate who leaves here will take something with them from these 30 hours and go out there and be better people. The lifetime affects of this are so much bigger than just one sum of money. This is transformational and it is going to last a lifetime.