HUMPHREY — Blakely Janata is going to light up New York.
With a smile like hers, how could she not.
The Humphrey girl was chosen to have her photo displayed at Times Square as part of Down syndrome awareness.
Blakely, who turns 3 on Aug. 11, is the daughter of Jason and Stacey Janata.
Stacey said she heard about the photo contest through Down Syndrome Alliance of the Midlands in Omaha.
“When she was born, they reached out to us, which was huge because they have a lot of moms on their Facebook page, and all those moms ask questions and share information. We submitted (a photo) last year and didn’t get chosen, but they posted (the contest information) again, and we entered.
“We really didn’t think we’d get chosen because there are so many submissions (over 3,000),” she said.
The photo, which was taken at Stacey’s brother’s wedding in May, when Blakely was one of the flower girls, will be on the jumbotron in Times Square as part of a slide show of all the children whose photos were chosen. It is part of a buddy walk for Down syndrome awareness.
People are bused to Central Park for the walk, and the Janatas hope to walk this year.
Blakely will be featured on the big screen in the heart of New York City as a part of the National Down Syndrome Society’s (NDSS) annual Times Square Video presentation on Saturday, Sept. 14.
The Times Square Video presentation kicks off Down Syndrome Awareness Month on the morning of the NDSS Buddy Walk in New York City. About 500 photos will appear in the Times Square video.
For Stacey and Jason, they never imagined they would be in this position. There were no signs during Stacey’s pregnancy that Blakely had Down syndrome.
“We found out when Blakely was born (at Faith Regional Health Services in Norfolk) that she had Down syndrome,” Stacey said. “She spent about a week at Children’s (Hospital and Medical Center) just for monitoring because they heard a heart murmur, and every time they hear a heart murmur, there’s a fear more is going on, but Blakely has been lucky that she’s never required heart surgery.”
She was born in the evening, and it wasn’t until the next morning the Janatas found out.
“I remember the doctor came in to do the physical and they took her out of the room. She came back in and sat us down and said she had some concerns (that) Blakely had Down syndrome, and she was showing some physical characteristics of it, and she had the heart murmur and would need to be transferred to Children’s right away.
“We kind of freaked out, and she (the doctor) made it as positive as she could by telling us that people with Down syndrome can lead full lives and there’s support out there,” she said.
The diagnosis was confirmed with a blood test, and Stacey said it was an emotional time for her and her husband.
“I just think you’re expecting something else than what you’re told. We actually had some family who were on their way to the hospital. We didn’t tell them anything but asked them to turn around. We were not up for visitors. I had somebody else show up unexpectedly, and it was so hard to put a smile on because we were so heartbroken, but yet you want to love that child,” she said.
At Children’s, there was another family that had a child with Down syndrome who talked to them and gave them a poem, “Welcome to Holland,” which describes a family expecting a trip to Paris but ending up in Holland and how there is disappointment at first until they realize how beautiful Holland is.
That is how the Janatas feel about Blakely; they wouldn’t change a thing about her.
“Over the next couple months, we would just look at her and see this sweet, little baby. All those things help you, plus a support system. You just realize this is our baby. She’s a smart little girl.”
They have learned not to set limitations on her and to have expectations like they have for their other children. The Janatas have two other children, 18-month-old Kolton and 10-week old Griffin, who were born without Down syndrome.
Down syndrome is a genetic diagnosis in which people are born with three copies of the 21st chromosome, and everyone else has two. Blakely has 47 chromosomes instead of 46. It manifests itself in such physical features as in almond-shaped eyes, a flat nasal bridge and a single line across the palm of the hand (palmar crease).
But it has not been smooth sailing for her.
“Blakely’s had it tough, a tough road, so it was even more exciting she got picked (to have her photo displayed),” Stacey said. “When she was at 13 months, she got really sick and ended up being hospitalized at the medical center for over seven weeks with a diagnosis of HLH (hemophagocytic lymphohistiocytosis), which is a rare life-threatening immune disease, so we went through a lot.
“Then she made it home, defying all odds, and then about a year ago she was diagnosed with systemic JIA, which is juvenile idiopathic arthritis, so she has had treatment every day for a year, coming up in August,” Stacey said.
Blakely is doing well these days and will start preschool in the fall one day a week.
She has therapy sessions twice a week out of the home and once a month at home. She’ll also receive therapy at school.
Blakely has taught herself sign language through watching a series of DVDs, “Baby Signing Times,” and knows more than 100 signs. She has even taught signs to her brother, Kolton.
Stacey, 28, and Jason, 29, have had to learn to sign, and Stacey said Blakely has taught them more than they have taught her.
“She learned all of her signs through DVDs. There’s songs and it teaches signing, like food, and animals, there’s a sign for Kolton,” she said.
Jason works for his father in Howells at J&H Milling, which grinds feed for pigs.
Stacey works two days a week for Central Nebraska Rehabilitation Services as a school occupational therapist, traveling to area schools, which makes understanding and helping Blakely easier. She had worked with children with Down syndrome, so she had some familiarity with it, but not like she understands it now.
Stacey said they have had lots of family support.
“We just want to spread awareness and acceptance and inclusion of everybody with Down syndrome,” Stacey said. “You want parents to talk to their kids that everybody is different, and everybody deserves the same opportunities in life. I think Blakely has certainly shown us that. We wouldn’t change a thing about her.”