Blakely Janata’s face lights up a room with her big, vibrant smile and cheerful demeanor.
In just a week, that same face will shine in the heart of New York City during the National Down Syndrome Society’s (NDDS) annual Times Square Video presentation. The presentation kicks off Down Syndrome Awareness Month on Sept. 14, the morning of the society’s Buddy Walk that weaves through Central Park.
The 3-year-old Humphrey resident is one of about 500 children having their picture shown during the Times Square Video presentation. She and the others represented in the video were selected from a pool of more than 3,000 entries, according to information provided by the NDDS.
Every year, the society makes an effort to remind the world in a big way about the big gifts that people with Down syndrome bring to their communities through a special presentation presented on a jumbo screen smack dab in the middle of Times Square.
The featured photographs highlight children, teen and adults with Down syndrome working, playing and learning alongside their friends and family. This was the second year that Blakely’s parents, Stacey and Jason, submitted a photo of their daughter for consideration.
The pair learned of the opportunity through their affiliation with the Down Syndrome Alliance of the Midlands in Omaha. While not being selected last year was disappointing, Blakely’s parents figured there was always another opportunity.
But after applying to the NDDS earlier this spring, Jason and Stacey figured making the trek to New York City was once again a no-go.
“It’s really exciting, we were kind of waiting for the news, because we kind of got told when they were going to be doing the selection,” Jason said. “But then we didn’t hear anything so we kind of put it behind us again and thought, ‘Well, maybe next year.’ But then I was at work and Stacey said she had a surprise for me … When I got home she told me Blakely was selected.”
The selected picture is one of Stacey and Blakely clad in wedding attire. Blakely is wearing a white flower girl dress with a matching bow in her hair. A big smile is plastered on her face.
For Stacey, it’s far more than a picture, it’s a glimpse at her daughter doing something that at one point in time she never thought possible. After being diagnosed with Down syndrome a day after she was born on Aug. 11, 2016, she spent a week in an Omaha hospital before coming home.
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Shortly after, the health issues arose. In May 2017 the fevers and rashes started, followed by the vomiting. Blakely was soon hospitalized in November of that year and diagnosed with Hemophagocytic lymphohistiocytosis, a severe systematic inflammatory syndrome that can prove fatal.
“Throughout the whole thing, having the doctors that we have come in contact with saved her life, ultimately,” Stacey said.
The child was re-hospitalized in February of last year and diagnosed with systematic onset juvenile idiopathic arthritis, something Stacey said her child will likely deal with for the rest of her life.
There’s been a lot of scares, a life flight, lots of fears and tears, but Blakely so far has fought through all the obstacles she has encountered and come out on the other side.
The picture of Stacey and Blakely that will be featured for hundreds – if not thousands – in attendance, at its core, is all about a kid just having the chance to be a kid.
While submitting the photo, Stacey gave a little blip about what was happening in the picture.
“We could submit like one line, and all I put was just that we were so excited that she could do something that any kid could do – her cousin was a flower girl, too,” Stacey said. “So many kids get to be flower girls, but for Blakely, it felt so special just because she has been through so much.”
Blakely won’t actually be in attendance during the festivities, as Stacey said that the trip would probably be a bit much for her to handle at this stage. But rest assured, she will be well-represented by her parents, who are more than excited to have a fun getaway and see their daughter’s smiling face featured in one of the most well-known spots in the U.S.
“It’s been on our bucket list for a long time to get there,” Jason said of visiting New York City. “And now we have this exciting opportunity to see Blakely’s face in Times Square, which makes all of this even more exciting. It’s just going to be a whole lot of fun.”
Sam Pimper is the news editor of The Columbus Telegram. Reach him via email at email@example.com.