South Barrington mother Nancy Gianni founded GiGi's Playhouse, Inc., a national Down syndrome awareness and achievement organization in Hoffman Estates in 2003, shortly after her daughter Giuliana (GiGi) was born with Down syndrome.
Gianni said that as a new mother who knew nothing about Down syndrome, she felt devastated and hopeless, until she realized that Giuliana was more like her two other children, Franco and Isabella, than different.
Gianni shared her story with Barrington Suburban Life reporter Tarah Thorne, explaining how greatly her non-profit organization has grown in just over a decade.
Thorne: Can you believe how far GiGi's has come?
No. We are truly blessed. I am constantly blown away by our growth.
Thorne: What was your goal starting GiGi's?
Educating my own community on the potential of individuals with Down syndrome. I also wanted people to have a place to celebrate and understand their diagnosis and take away some of the fear associated with Down syndrome.
Thorne: In what ways has GiGi's changed or stayed the same today?
We have now evolved into education and achievement centers, offering free one-on-one tutoring in literacy and math and 30 other educational and therapeutic programs. We also went from one location in 2003 to 22 in 2014, with several more communities working to open in their areas.
Thorne: What has been most rewarding this past year?
The opening of our new achievement center and establishment of our GiGi University program. The center is a 10,000 square-foot facility that houses GiGi University, our national training center, a gym and our new Hugs and Mugs retail store that is run by our GiGi University graduates. GiGi University, a Down syndrome adult program, has helped people realize that you never age out of GiGi’s. We make a lifetime commitment to our families.
Thorne: Describe a typical day in your GiGi's life.
Most days I am blessed to start the day with a greeting from our GiGi University students or the infants. The rest of my day is spent overseeing the operations of 22 locations and the hundred more that want to open.
But one thing that trumps it all is when a new parent or a pregnant mom walks in the playhouse. Nothing is more important than helping those families through their diagnosis. It always reminds me why we do what we do.
Thorne: What do you enjoy doing in your free time?
I like being with my family – fishing, playing cards, working out, eating dinner, and just being together.
Thorne: What would you like to do ultimately with GiGi's?
I'd like to create a TV show or documentary that would allow the world to get a glimpse into the lives of people with Down syndrome and the people who open GiGi's Playhouses across the world.
Every Playhouse has an incredible story to tell as we continue to grow one child, one diagnosis, one community at a time. It truly is amazing.
Thorne: What's next this spring and summer?
I am travelling to Maryland to receive the Social Entrepreneur award from Stevenson University. I am going to speak at their commencement ceremonies and receive my honorary doctorate. Then, Giuliana and I will be touring the national Playhouses this summer.
Thorne: Where do you find most support to come from?
Our donors are incredible. Some may not even have a connection to Down syndrome but understand the need for acceptance of all.
Our kids are catalyst because they wear their diagnosis on their face, but our message reaches far beyond Down syndrome. We are seeking an international message of acceptance for all.
Thorne: What keeps you motivated and strong?
Besides Giuliana and my family, it is the amazing Playhouse leaders across the country and in Mexico who fight for our kids every day. They all have a story that needs to be told.
Thorne: What's been most challenging?
Personally, losing my old life, some of my friends, and not knowing how to slow down.
Professionally, building a strong infrastructure to ensure the Playhouses are a strong, sustainable, replicable models.
It was not easy. When I opened the first Playhouse, my motto was to ask for forgiveness not permission. I had to change that a bit as we began to grow. I am happy to say that we did it.
Thorne: How have you seen Down syndrome awareness grow or change since GiGi's began?
Yes. Awareness has definitely grown and attitudes are still changing. Families are accepting and embracing the diagnosis earlier than ever. They are proud and understand that Down syndrome is not a life sentence, but rather a gift. The sooner the family accepts the diagnosis the better the life that child will have.
Thorne: Why do you think this is?
We are taking away the stigma associated with a diagnosis and giving the family hope and the tools they need to face this diagnosis and succeed in life.
Thorne: What would be your advice to anyone seeking help with understanding Down syndrome?
Talk to someone who lives it. Do not search the internet. Call a Playhouse, come in for a tour, and meet our amazing families.
We recently had a couple come to the Playhouse straight from the hospital after finding out their unborn child had Down syndrome. I feel so blessed that we were there for them at the scariest time of their lives. I will never forget being blindsided by the diagnosis and I want to help people through that.
If you go
What: GiGi's Playhouse Down Syndrome Achievement Center
Where: 2350 W Higgins Rd., Hoffman Estates
Cost: Programs are free
Info: Call 847-885-7529 or visit www.gigisplayhouse.org for information