The infectious smile of a Pocatello toddler will appear among the bright lights of New York City on Saturday as part of the annual National Down Syndrome Society Times Square video presentation.
Corina and Joey Sully — parents of 2-year-old Maddox, who was born with Down syndrome — traveled to “The Big Apple” on Thursday ahead of the big event — a one-hour video presentation of over 500 photographs of children, teens and adults with Down syndrome from all 50 states and 14 countries that will be broadcast in Times Square on Saturday.
“We are so excited to be here because we don’t see a lot of Down syndrome kids in Pocatello,” Corina said on Friday. “We went to get all of our T-shirts and stuff for the event today and seeing so many people with Down syndrome in one place and being able to connect with all these other parents was fun.”
The video presentation is hosted in coordination with the National Down Syndrome Society, or NDSS, Buddy Walk, which has been the world’s most recognized public awareness program for the Down syndrome community since its inception in 1995, according to the NDSS website.
The flagship Buddy Walk in New York City attracts thousands of participants from all over the United States each year and has served as a marquee event for celebration, solidarity and joy for the Down syndrome community.
Each year, about 5,700 babies in the United States are born with Down syndrome, a genetic condition that occurs when a person has an extra copy of chromosome 21, or a portion of that chromosome, according to the Centers for Disease Control.
There are three types of Down syndrome — Mosaic, Translocation and Trisomy 21, according to the NDSS.
Mosaic Down syndrome accounts for about 2 percent of cases and occurs when some cells have the usual 46 chromosomes and others have 47, including an extra copy of chromosome 21.
Translocation accounts for about 3 percent of cases and occurs when an extra or partial copy of chromosome 21 attaches to another, usually chromosome 14.
The most common type of Down syndrome, and the one that Maddox has, is Trisomy 21. It accounts for 95 percent of cases and occurs when a pair of 21st chromosomes fails to separate before or during conception, resulting in three copies of chromosome 21 in every cell.
“Translocation is where it’s genetic,” Corina said. “So you get it from one of your parents because they carry the gene. And then there’s just your regular Down syndrome, which can happen to anybody.”
She continued, “We learned with having a Down syndrome child that it can be the result of a special fluke or one of the parents genetically carriers the gene. There is testing available for parents to find out if they carry the gene. We chose to do the testing just out of curiosity and found we do not carry the gene and just received Maddox as our special gift “
While raising a child with Down syndrome comes with its own set of unique challenges, Corina says there’s also distinct traits that make Maddox a magnificent baby. The biggest challenges are the health issues that can affect people with Down syndrome, she said.
“Maddox is only 2 and he was hospitalized three times last year and once so far this year,” she said. “Every time he gets sick it can escalate from zero to 100 pretty quickly. The last time that he got sick he came down with COVID, RSV and rhinovirus all at the same time. He also has a heart condition, which is common among those with Down syndrome.”
Another adversity that parents of Down syndrome children must grapple with is how varying the diagnosis can be from one person to another. The typical milestones that other parents experience are often not quite the same for those with Down syndrome children, Corina said.
“It’s not a very typical delivery and they are usually always sick with something for the first couple of years of their lives,” Corina said. “He’s so different and his milestones are different. He’s not walking yet, and with his low muscle tone, feeding is difficult. Everything is delayed a little bit.”
But what makes Maddox so special is his overwhelming happiness.
“He is the happiest baby ever, like so goofy and always smiling and laughing — even when he’s super sick,” Corina said. “He has become famous at the hospital. He will have all the nurses and doctors in there coming to see him because he just has the best personality. He’s really happy all the time.”
Many with Down syndrome grow up to be visual learners who have a high capacity for empathy, great social understanding and a natural adeptness with technology, of which the latter is something that has helped Corina navigate her life with Maddox.
Social media, particularly the Facebook page “Parents of children with Down syndrome,” has been a godsend for her, she says. With a group size of over 28,000 members, the page has become a safe place for her to seek feedback or support whenever the family has questions or experiences something new.
“I can go there and ask a question and there is always someone who has already experienced it,” Corina said. “It’s not just local either. It’s people from all over the U.S. and the world. I’ll ask something about seeing a pulmonologist or cardiologist and by the end of the day there’s 170 responses from all over.”
Technology also played a role in Maddox being featured in the NDSS video presentation. It was in February that Corina, while she was interacting with some of her go-to social media pages, learned the NDSS was seeking photo submissions for the Times Square event and she decided to apply. She found out in July that Maddox had been selected while on a family vacation in Cancun.
“I read the email and instantly started crying,” she said. “My entire family was super excited and started cheering and my husband and I hugged each other.”
Corina had just a few short weeks to plan the trip to New York City with Joey, Maddox and their oldest child Axel, who is 9 and does not have Down syndrome.
A photo of Maddox will be shown on two jumbotron screens in Times Square on Saturday thanks to the support of ClearChannel Outdoor. The two screens are above Dos Caminos restaurant in Father Duffy Square.
The presentation will also be livestreamed on the NDSS Facebook page on Saturday morning.
Following the video presentation, the Sully family will join others in the 30th annual Buddy Walk, a one-mile walk through scenic Central Park. And then on Sunday those in the NDSS community will attend a Mets game together.
“Today we saw the Empire State Building and the Statue of Liberty, sort of doing all the sightseeing in between,” Corina said on Friday. “We’re just happy to be here to celebrate with others in the Down community.”
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