After a difficult year filled with medical issues, a 1-year-old girl’s grin seemed even sweeter as her happy father held her up in front of her larger-than-life portrait that was posted on a Jumbotron in Times Square as part of a Down syndrome awareness campaign. The photo was displayed as part of the Down syndrome awareness campaign.
Olivia Chandler, who was born with Down syndrome, just celebrated her first birthday on August 16. Less than a month later, on September 9, she made her debut in New York as a participant in the Buddy Walk, which has been the signature event of the National Down Syndrome Society since 1995.
After Olivia’s challenging first year of life, it was a moment of victory for the family when she finally got her baby teeth.
“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 about it. “It was a horrible year and we just needed something positive to come out of all of this.”
Shortly after her birth, Olivia began experiencing difficulties with her respiratory system. Orr, a respiratory therapist who is 39 years old, very immediately had the impression that something was off.
But they were taken aback when the physician informed them that there was a possibility that Baby Olivia had Down syndrome.
Orr, who is also the mother of a boy who is nine years old, describes the moment she and her husband gazed at one other: “The blood just fell out of him; he was just in shock.” “You were too. We just did not know anything about Down syndrome at the time since this was his first biological kid.
Orr claims that she can recall having a conversation with the doctor about an ultrasound, during which the physician reassured her that the likelihood of having a kid with Down syndrome was very remote. And then, almost immediately, all of it was forgotten, at least until Olivia was born.
Their physician advised them not to Google anything until the results of all of the tests were in, but the parents began searching the internet as soon as she left the room after giving them this advice. Orr states that despite the fact that everything they read gave them reason for concern, they “didn’t have time to really think about it for too long because she was so sick.”
“She was not taking in enough calories since she was not eating. “The thought that she might have Down syndrome was pushed to the back burner because we were having so much trouble with her,” Orr explains.
Olivia’s parents noticed very immediately after they brought their new baby girl home that she was not gaining weight and that she often threw up. They were informed that Olivia had failure to thrive (FTT), which is a frequent symptom of kids born with Down syndrome, as well as a cardiac condition.
According to Orr, when she underwent surgery, it was revealed that her laryngeal nerve had also been damaged, and she had a paralyzed voice chord.
“But throughout that entire process, including even after she had heart surgery, she was smiling,” adds Orr. “She possesses this incredible energy that will simply transform you on the inside while simultaneously causing you to smile on the outside.”
The pair started to have a better understanding of Down syndrome as more time passed and as they were exposed to more reliable material.
According to the Centers for Disease Control and Prevention (CDC), around 6,000 new newborns are born with Down syndrome every year in the United States. This makes Down syndrome the most prevalent chromosomal abnormality identified in the nation.
According to Orr, “We should not have been crying about what we learned on Google because there is a lot of frightening information that is out of date.” “She is just the happiest little kid in the whole world, and the sight of her will just make your heart melt. It’s impossible for me to picture my life without her.
Orr attributes a significant portion of her first anxieties to the fact that she was “uneducated and not prepared.”
“I think someone should have let us know it was going to be okay, especially in those first few months,” Orr says. “I think we would not have been so sad in the beginning if they had told us it was going to be okay.”
In the end, Orr was able to find support in the form of a community via the Central 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,” recalls Orr. “That was the first time we had any contact with anyone in the Down syndrome community.”
Orr made the decision to participate in the competition she had discovered while browsing the internet in April of this past year on a whim. She claims that Olivia spent “pretty much” all of her first seven months of life at a medical facility.
“It seemed like every time we went home, she’d get a virus or something, and we’d be right back at the hospital again,” Orr recalls. “Every time we went home, it seemed like she’d get a virus or something.” “So when we brought her to have photographs taken when she was seven months old, her grin was really beautiful. I had no idea whether or not she would be picked, but with that grin, I was really hopeful that she would.”
In the end, there were around 2,400 submissions, and Olivia’s grin allowed her to truly stand out from the crowd.
“After seeing Olivia’s picture and that adorable smile, it was not a difficult decision to decide that we wanted her photo displayed in the 2023 Times Square Video,” According to Missy Adams, who manages community activities for the National Down Syndrome Society, PEOPLE was informed of this information. This year, 95 percent of the images that were chosen were chosen for the very first time for this event. Our objective is to provide the chance for as many individuals as possible to have their photographs shown on the large displays in Times Square.
On August 1, Orr learned at work that Olivia had been selected as one of the fortunate recipients. The family moved fast to make travel arrangements in order to arrive in time to enjoy a few days of sight-seeing at their destination.
“Olivia performed an outstanding job. She was constantly smiling at someone and somebody was always smiling back at her,” Orr adds. “She made a friend wherever we went, on the metro, on the bus. She was always smiling at somebody and somebody was always smiling back.” Throughout the whole event, we were the recipients of several kind compliments from audience members.
What can we say about the adorable snapshot of Olivia beaming as the Jumbotron can be seen in the background? It had not been prepared for in advance.
Orr explains, “Of course, she was grinning from ear-to-ear, so I posted the photo, and all those comments started coming in about how beautiful she is.” It’s fantastic that she’s helping to raise awareness of Down syndrome in such a significant way.
In addition, when they were in the Big Apple, the family went to a few other events. In an effort to encourage acceptance and participation, the National Down Syndrome Society launched the Buddy Walk program in 1995. This program serves to raise both cash and awareness of Down syndrome.
“There was a girl with Down syndrome who sang the national anthem, and there was a boy who gave a great motivational speech,” Orr explains. Simply being able to observe all of those thousands of individuals was an amazing and motivating experience.
Their days consist mostly of attending to Olivia’s medical requirements for the time being. Because there is no one else in the area who can assist them, Chandler, 41, and Orr rearrange their schedules in order to ensure that one of them is always there to care for their kid.
Orr describes this man as “simply the best dad ever.” Because she is not yet at the stage where anybody else can take care of her, he does everything for her. (Jaxson Whitehead, Olivia’s younger brother who is nine years old, also contributes.)
If a parent learns that their kid has Down syndrome, Orr says she wants them to know that everything will be well and that there are individuals and organizations in the community that can assist them if they call out for assistance.
“That kid is going to alter your life, and your life is going to change because of that child. Orr asserts that the world is a better place because of the people who have Down syndrome, whether they are children or adults. “Even with an average child, you have no idea what the future has in store for them. Our goal is to provide my daughter Olivia and my son Jaxon with the greatest life that is can.
