1-Year-Old Shows Off Beautiful Smile After Being Chosen for Down Syndrome Awareness Campaign (Exclusive)

Dad John Chandler lifts up Olivia in front of her Jumbotron image in this viral photo.Photo:Scantling Photography / Courtesy of Lori Orr

Scantling Photography / Courtesy of Lori Orr

After a tough year filled with medical challenges, a 1-year-old girl’s smile looked even sweeter when her proud papa held her up in front of her larger-than-life photo, which was featured on a Jumbotron in Times Square as part of aDown syndrome awarenesscampaign.

Born with Down syndrome, Olivia Chandler celebrated her first birthday on Aug. 16 — less than a month later, she made New York debut on Sept. 9 as part ofBuddy Walk, the National Down Syndrome Society’s flagship event since 1995.

It was a triumphant moment for the family following Olivia’s difficult first year of life.

“We had a really good summer period when we didn’t have to worry about the hospital or anything like that, so being on the Jumbotron was just icing on the cake,” mom Lori Orr tells PEOPLE. “It was a horrible year and we just needed something positive to come out of all of this.”

Olivia Chandler, 1, in New York City.Courtesy of Lori Orr

Courtesy of Lori Orr

Olivia started having respiratory problems not long after she was born. Orr, a 39-year-old respiratory therapist, sensed something was wrong almost immediately.

“Me and my husband looked at each other and the blood just fell out of him, he was just in shock,” Orr, also mom to a 9-year-old son, says. “I was too. This was his first biological child and we just didn’t have any information about Down syndrome.”

Orr says she remembered discussing an ultrasound with the doctor, who assured her she only had a very slight chance of having a child with Down syndrome. And it was all quickly forgotten, until Olivia was born.

Their doctor told them not to Google anything until all the tests came back, but the parents started scouring the internet immediately after she left the room. Although everything they read scared them, Orr says they “didn’t have time to really think about it for too long because she was so sick.”

“She wasn’t eating, wasn’t getting enough calories. We were having so much trouble with her that the thought of Down syndrome was put on the back burner,” Orr says.

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After undergoing surgery, it was discovered her laryngeal nerve had also been impacted and she had a paralyzed vocal cord, according to Orr.

“But that whole time, even after heart surgery, she was smiling,” Orr says. “She has this awesome spirit that will just change you on the inside and make you smile on the outside.”

Olivia’s first plane trip to New York City.Courtesy of Lori Orr

With time, and a lot more credible information, the couple began to understand more about Down syndrome.

Down syndrome is the most common chromosomal condition diagnosed in the United States, and each year, about 6,000 new babies in the country are born with it, according to theCDC.

“We should not have been crying about what we learned on Google because it’s a lot of scary, outdated information,” Orr says.“She’s just the happiest little girl in the world and just melts your heart. I can’t imagine not having her.”

Orr chalks up a lot of her initial fears from being “uneducated and not prepared.”

“I think we would not have been so sad in the beginning if someone had let us know it was going to be okay, especially in those first few months,” Orr says.

Eventually Orr discovered a community to lean on in theCentral Oklahoma City Down Syndrome Association.

“They invited us to a picnic last spring here in the city and that was the first time we had any contact with anyone in the Down Syndrome community,” Orr says.

On a whim this past April, Orr decided to enter the contest she had found through scrolling the internet. Olivia, she says, had “pretty much” been in the hospital for the first seven months of her life.

“Every time we’d go home, it seemed she’d get a virus or something and we’d be right back at the hospital again,’’ Orr says. “So when we took her to get pictures at seven months her smile was just unbelievable. I didn’t know if she’d be chosen, but I was hoping with that smile she would.”

In the end, there were about 2,400 entries — and Olivia’s smile really helped her stand out.

“Seeing Olivia’s picture and that sweet smile, it was not a hard choice to know we wanted her photo displayed in the 2023 Times Square Video,’’ Missy Adams, manager of community events forNational Down Syndrome Societytells PEOPLE. “This year, 95% of those photos selected were first time selections for this event. Our goal is to give as many people as possible the opportunity to have their photo shown on the big screens in Times Square.”

Olivia Chandler with mom Lori Orr.Courtesy of Lori Orr

Orr got word at work on Aug. 1 that Olivia was one of the lucky winners. The family quickly booked a flight and a hotel and arrived in time to do a few days of sightseeing.

As for the sweet smiling photo of Olivia with the Jumbotron in the background? It wasn’t planned in advance.

Jaxon Whitehead, 9, John Chandler, Olivia Chandler, Lori Orr doing some sightseeing.Courtesy of Lori Orr

“There was a girl with Down syndrome who sang the national anthem and a boy who gave a great motivational speech,” Orr says. “Just seeing all those thousands of people was really neat and so inspiring.”

For now, their days are filled with taking care of Olivia’s medical needs. Without anyone around to help, Chandler, 41, and Orr juggle shifts to make sure one of them is always there to care for their daughter.

“He’s just the best dad ever,” Orr says. “She’s not at the point where anyone else can take care of her yet and he does everything for her.” (Olivia’s 9-year-old brother, Jaxson Whitehead, chips in too.)

Orr says she would like to tell people who discover their child has Down syndrome that it will be okay — and there are organizations in the community that can help if you reach out.

“Your life is going to change and that child is going to change you. These kids and adults with Down syndrome, they are making the world a better place,” Orr says. “Even with a typical kid, you don’t know what the future will bring. We are just trying to give my son Jaxon and Olivia the best life possible.”

source: people.com