It’s hard to imagine a happier place in Rochester than GiGi’s Playhouse.
GiGi’s Playhouse Down Syndrome Achievement Center serves children, adults, and their families from diagnosis at birth to adulthood. It’s a fun, colorful, and engaging environment in the Village Gate area where kids and adults with Down syndrome can play, learn, and interact with each other and where parents and families can gather, share stories, and support each other. It’s an inspirational place where families can celebrate their child and benefit from free programs that unleash joy, confidence, and continuous improvement.
Founded in 2003 by Nancy Gianni in a suburban Chicago strip mall, GiGi’s playhouse was named after Gianni’s daughter, GiGi, who was born with Down syndrome in 2002. Seeing the lack of support and resources for parents and families of kids with Down syndrome, Gianni created a place to make dreams come true. There are now fifty-five GiGi’s Playhouse locations nationwide and in Mexico, and it’s the only nationwide network of Down Syndrome Achievement Centers. Down syndrome is the largest chromosomal disability in the country but is the least funded. Ninetynine percent of the GiGi’s Playhouse workforce is volunteer, and services are completely free to families. The not-forprofit organization operates on donations and grants.
When Kim and John Guerrieri’s baby daughter, Gianna, was diagnosed with Down syndrome shortly after birth nine years ago, there were no physical spaces available in the Rochester area for parents and families to gather. Kim, along with Jennifer Bustamante, the mother of another child with Down syndrome, heard about GiGi’s Playhouse and, after visiting a branch in another city, they decided that this was desperately needed for Rochester. There are currently more than 400 participants in its programs.
GiGi’s has made a lifetime commitment to empower families with all the tools that their children need to succeed. The programs offered by GiGi’s Playhouse encompass speech and literacy skills, math, handwriting, fitness, occupational and physical therapy, life skills such as cooking and finances, as well as career skills. Although GiGi’s Playhouse was founded to serve those with Down syndrome, it is not exclusive to this and accepts participants with other developmental disabilities.
Donna Rush is Gianna’s grandmother and the executive director of GiGi’s Playhouse Rochester. She comes to the role from years in education and fundraising. Gianna inspires her every day. In addition to Rush, there is a licensed speech therapist on staff and two additional part time employees, but it is the volunteers who make GiGi’s Playhouse. The Rochester community has embraced the organization. From the colorful art adorning the walls to educational materials and much needed funding, there are more than 200 people who donate their time and talents to make GiGi’s Playhouse a vibrant and exciting place to be. Nazareth College hosts programs through their Speech Pathology department, and other volunteers are trained in teaching literacy, math, fitness, and more.
Carrie Bergeron is the therapist assistant at GiGi’s Playhouse and also serves on the board. She brings a rare and insightful perspective to the organization. Diagnosed with Down syndrome after birth, Bergeron is grateful to have had parents who gave her every opportunity to grow and to learn to live an independent life. She has lived independently in her own apartment since 2006. After she graduated with an IEP Diploma, she attended community college and earned her teacher’s assistant certificate. In addition to her work at GiGi’s Playhouse, she volunteers in other preschool programs and is a much-sought-after speaker, sharing her story to inspire others to reach their full potential. She has also authored a children’s book, Tommy the Special Tomato, inspired by a conversation with her father.
Like most organizations, GiGi’s Playhouse navigated its way through the COVID pandemic by running its programs virtually. “We were able to get up and running virtually within a week of everything closing down so that we could continue to serve our families,” says Rush. However, the organization’s major fundraisers, an annual gala and a golf tournament, had to be cancelled. This left a huge gap in funding. The team is back live and in person but are taking all CDC precautions and limiting class sizes.
“There are more than 1,000 people with Down syndrome in Rochester and more than 3,000 in surrounding counties,” says Rush. “There are generations of Down syndrome adults out there who have never had access to training, resources, or the ability to network with each other.” It is adults with Down syndrome who utilize the facility the most and its “Fantastic Friends” program offers the opportunity to connect socially, play games, do crafts, and learn life skills.
Very often, after a student with Down syndrome completes high school, there is a big question mark. What’s next? The Rochester branch hopes to join other branches of GiGi’s Playhouse and offer GiGi’s Prep and GiGi’s University which will offer more career training and independent living skills.
Adults and kids with Down syndrome suffer most from the lack of acceptance. The struggle is real and constant. However, at GiGi’s they hope to change this one diagnosis, one child, and one community at a time. A new initiative of GiGi’s Playhouse is “#Generation G,” where everyone makes a conscious decision to be better to become a changemaker set on making the world a kinder, gentler place for people of all abilities.
“It’s hard for a parent to walk through those doors for the first time,” says Rush. “But when they do, we congratulate them on their amazing child and welcome them to this incredible space. Often parents, upon discovering that their child has Down syndrome, don’t know where to turn and face a different life than they expected. That life, however unexpected, can be no less amazing and wonderful.”
If you are a parent or family who would like to learn more about the programs at GiGi’s Playhouse visit gigisplayhouse.org/Rochester.
To volunteer, or to learn how you can support GiGi’s Playhouse, email: drush@gigisplayhouse.org or call 563-7487.