The Upside to Down Syndrome

GiGi’s Playhouse Comes to Annapolis

By Jessica Shelton | Photography by Heather Crowder

 

 

Anna Nardone Hayden with Kate, Sean and Grant.

A popular adage dictates: where there’s a will, there’s a way. But substitute “mom” for “will” and you’ve got a formula for social change. Throughout history, devout and dynamic mothers have led the charge, winning hearts, votes and fundraising dollars for worthy causes with the help of baked goods, cocktail parties and letter-writing campaigns.

Nancy Gianni, proud mama to the now national movement called GiGi’s Playhouse, is no different. Like her soul sisters Candace Lightner (Mothers Against Drunk Driving) and Lee Ducat (Juvenile Diabetes Research Foundation) before her, she’s on a mission to make the world a better place, beginning with a promise she made to her daughter, GiGi, in 2002. When GiGi was diagnosed with Down syndrome, Gianni was petrified. The doctors spoke negatively, nurses wouldn’t make eye contact with her, and initially, even friends and family walked on eggshells when they came to visit the newborn, offering hugs of sympathy instead of congratulations. Nobody knew how to handle GiGi’s diagnosis.

But Gianni didn’t give up. In the midst of fear and misunderstanding, she vowed to teach the world to celebrate her daughter and other children with Down syndrome. Individuals diagnosed with the genetic disorder face varying degrees of hypotonia (low muscle tone), unique health complications and social, cognitive and motor delays. However, education, appropriate medical care and early childhood intervention can drastically improve their well-being. Today, individuals with Down syndrome are able to attend neighborhood schools; some drive cars, obtain jobs and participate in extracurricular activities. Due to advances in technology, the life expectancy of an adult with Down syndrome has increased from age 9 in 1910 to 60, with many individuals living well into their seventies.

Krystle Foy and her daughter Grace.

In 2003, just five months after GiGi was diagnosed, Gianni opened GiGi’s Playhouse, a Down syndrome achievement center providing therapeutic and educational programming to Chicago-area families free of charge. The national network has since expanded to 32, with the latest Playhouse slated to open in Anne Arundel county this fall, thanks to the work of a tireless 11-person committee made up of Maryland moms, grandmas, godmothers and one lone (but crucial!) dad.

In pursuit of Gianni’s original quest, GiGi’s Playhouse Annapolis will offer a physical space for parents to connect and for children of all ages to develop new friendships and abilities while upending harmful stereotypes about the genetic disorder.

“The old-school term used to be that they were floppy babies,” says Anna Nardone Hayden, “since children with Down syndrome are born with varying degrees of low muscle tone.” But Hayden, President of GiGi Annapolis’ Start-up Committee, doesn’t let the diagnosis define her daughter, Kate. The eight-year-old has so much more to offer: She is strong, smart, rides her bike and goes to school with other kids who do not have Down syndrome. She is winsome, a master of comedic timing and, says Hayden, “a kid just like every other kid.” This is what has been overlooked—Down syndrome is a diagnosis but that’s it; children with Down syndrome feel just as deeply as any other. They read, ride bikes, and express a full range of emotions, explains Hayden. “Kate teases her brother and is teased by him. Like any other kid, sometimes she does not want to do her homework.” She sings, twirls, climbs and frequently rolls down her window in traffic to engage other passengers. “With any child, it’s so important to set high expectations,” Hayden says. “And for us, at the end of the day, Kate is Kate, who happens to have Down syndrome.”

GiGi’s Playhouse Committee member Andrea Dantinne with her son Parker.

Playhouse programs are designed with the latest research in mind, incorporating multi-sensory targeted content and consistency to ensure lessons are accessible across every age group and ability. Volunteer program coordinator Florence August, whose daughter Olivia is 20, is excited for GiGi University. The 12-week program helps adults with Down syndrome practice money management, customer service and public speaking. Meanwhile, younger participants can sign up for math and literacy tutoring or hone their social, language and motor skills at Playhouse Pals and Kids Club, GiGi’s programs for school-age children.

With the high cost of private therapy, money can be a stressor for many families affected by Down syndrome. A study published by the American Journal of Medical Genetics last December found that average monthly out-of-pocket medical costs were about $80 more for children with Down syndrome compared to other kids—or an extra $18,000 over their first 18 years of life. For Rachel Bucceri, a committee member from Crofton, equal access was one of the biggest factors that drew her to GiGi’s. She wants every family to be able to afford early intervention—insurance or no—because she’s seen the impact it can make. “Corrina didn’t start talking until she was 4, so I didn’t even think she was going to talk,” Bucceri says, referring to her daughter. “[Three years later], we’re doing five-word sentences using conjunctions, and my husband says she’s going to speak at commencement.”

Because its programs are totally free, GiGi’s Playhouse relies on individual donations, the bulk of which will fund a site coordinator— the Playhouse’s only paid position—and rent. Hayden estimates that in order to keep the organization running, her crew will have to raise $180,000 each year. They’ll also need a reliable bunch of volunteers to make programs on five weekdays and one weekend day a reality.

The last order of business is finalizing a venue: the committee is hoping for an Annapolis home base because of the city’s centrality. With the closest Playhouse located in New Jersey, families may come from as far as Ocean City, Maryland, to partake in the center’s offerings. Size is another concern. There are already 200 families connected to GiGi’s, and the committee estimates there are another 1,221 individuals in surrounding counties who may benefit from Playhouse activities.

Supporting the Annapolis program doesn’t take much, just $21 a month. And the number isn’t random. Individuals with Down syndrome have a third copy of their 21st chromosome, a fact the Annapolis committee is channeling for good with its call for 321 Champions. That’s 321 people who, with a simple check, will offer GiGi and the many children and adults living with Down syndrome big hugs — not of sympathy, but of celebration.

 

From left to right: Rachel Bucceri, Krystle Foy, Florence August, Olivia August, Andrea Dantinne, Jennifer Andrianny, Becky Berger, Anna Nardone Hayden, Kim Eckert

 

 

To donate or get involved with Gigi’s Playhouse Annapolis, go to facebook.com/GiGisplayhouseAnnapolis.