A 15-year-old Lander girl who loves drama and theater has just learned that her photo will be part of a video featured on a giant New York City video screen in Times Square this September.
The event is part of an annual fundraising event for the National Down Syndrome Society.
Jorja Sparks was born with Down syndrome, and when told that her photo will be displayed one of the humongous screens above the Dos Caminos restaurant in Father Duffy Square in Times Square, she became excited, said her mom.
“She loves drama, she loves Broadway stuff, and so she’s always been, ‘I want to go to New York,’” said Jennifer Sparks said. “She asked if we could go and see it, and I was like, ‘We’ll see.’”
Jorja is the youngest daughter of Jennifer and Tom Sparks. They have three older children, all grown.
The couple are Wyoming natives.
Jennifer serves as a teacher’s aide at a Head Start program while Tom works as a maintenance technician for the Wyoming Department of Transportation, and also serves as a battalion chief for the Lander Rural Fire Department.
‘A Complete Blessing'
Sparks said her daughter came into the world four weeks early, and they did not learn she had Down syndrome until a week after she was born and genetic testing revealed her condition.
“She had to be life flighted to Denver and we spent three weeks in Denver at the NICU,” Sparks said. “And she has been a complete blessing to our family. She keeps everybody on their toes and she has taught us patience.”
Characterizing herself and her older children as active and always moving, the family had to quickly adapt to Jorja doing things on her own timeline, Sparks said. Her youngest struggled to talk and walk, but once she learned she was off and running.
The family has found that reverse psychology fires up Jorja’s determination.
“It kind of helps when you tell her, ‘Oh, you can’t do something,’” Sparks said. “Because then she gets this mindset, ‘Watch me,’ and she goes and does it.”
‘Spunky’
Sparks characterizes her daughter as “spunky” and sometimes shy her because Jorja considers being with Mom her “safe space.”
But when around others at Lander Valley High School, where she is heading into her sophomore year, “She’s a very outgoing, happy kid.”
The opportunity to get Jorja’s photo broadcast for all to see in Times Square came about on a whim.
Sparks said she saw something from the National Down Syndrome Society related the organization’s annual buddy walk fundraiser and an invite to send a child’s photo in to be considered for the video.
The video kicks off the annual walk in New York City.
State organizations also typically schedule buddy walks to coincide with the event.
“It’s a way to raise money to do research regarding Down syndrome, and so people donate money and they get teams together to do a walk,” Sparks said.
Sparks forgot that she had sent in Jorja’s photo until she was recently contacted and informed that her daughter was one of 500 chosen out of 2,700 applicants displayed on Sept. 12.
While the video with the photos will be displayed in Times Square, the walk happens in Central Park.
After seeing Jorja’s excitement, Sparks launched a GoFundMe to see if she could fulfill her daughter’s wish to be in Times Square when the video plays.
Airfare for the flights and hotels are expensive, she said.
Tentative Plans
The family would have to fly out on Sept. 10 to be in the city to register for the walk on Sept. 11. They would come home on Sept. 13.
“So, it would be a weekend trip because both her dad and I have to work,” Sparks said. “If the money comes through, we’ll obviously fly to New York, and then she’ll see her picture in lights on Times Square.
"We want to take her to see maybe a Broadway show, because that’s her thing, drama and plays and stuff like that.”
While the other members of their immediate family tend to be “reclusive” and would never seek out of the stage or public speaking opportunities, Jorja is the “fearless one” who enjoys getting in front of crowds, her mom said.
At Lander Valley High, Jorja had roles in “Oliver” last fall and “The Boy and His Horse” this spring.
Sparks said having her daughter’s photo chosen for the New York event is something special for the family.
“This is a huge honor and a moment that celebrates her achievements and the Down syndrome community,” she said.
Dale Killingbeck can be reached at dale@cowboystatedaily.com.
