Aurora Nilles, 3, already has plenty of excitement this week with her first preschool days at the West Valley Early Learning Center. Then Saturday, she and her family will watch for her portrait in Times Square.
Her photo is scheduled to join others in a video for the National Down Syndrome Society on the New York City big screen, part of an hourlong presentation. It’s also set as a livestream 6:30-7:30 a.m. Pacific Daylight Time on the group’s Facebook page, to launch its New York Buddy Walk in Central Park.
Aurora, family and friends plan to get up early to watch from their Millwood home. Early this year, Aurora’s parents Christopher and Heather Nilles sent in their daughter’s photo to the society, in an application process seeking portraits to highlight the value that people with Down syndrome bring to their communities.
Heather Nilles, who wants to support that advocacy, said her daughter is bubbly and loves her half days in school.
“She comes back just beaming,” Nilles said. Aurora has one brother, 6, in first grade. “She saw brother on the bus and said, ‘I get to ride a bus, too.’
“She is everything that you wouldn’t expect of somebody who has Down syndrome, so she is just like any typical 3-year-old – swinging, going on hikes, swimming, playing with the dog. She loves eating.”
Nilles said that some Down syndrome infants are born with heart defects that require early surgeries, or they have other medical issues and might have to go into the neonatal intensive care unit. Aurora didn’t have a heart condition, and she’s been healthy since birth.
Her mother said she has thrived in growth and development and also went into early therapies offered through Joya Child & Family Development, a nonprofit for ages newborn to 3 in Spokane County.
Down syndrome occurs when an individual is born with a full or partial extra copy of chromosome 21. The condition can cause mild to moderate cognitive disability, developmental delays and physical challenges. However, individuals might have these characteristics to different degrees, or not at all, says the national group’s website.
To raise awareness about their daughter’s condition, Nilles and her husband submitted Aurora’s portrait a year ago as well, but the application wasn’t selected then.
“I thought, we’ll try again this year, for any kind of awareness that we can bring,” Heather Nilles said. “Most people need to see difference to understand it, so just being able to share any part of our journey shows that it’s different and not less, and it’s not scary.”
The Buddy Walk is an advocacy initiative that the Down syndrome society launched in 1995 to raise awareness of Down syndrome nationally, while also raising funds to support programs and services. About 250 walks are held across the nation, but there isn’t one planned for the Inland Northwest. Nilles said a regional group held a fundraising walk earlier this year.
This Saturday, the Nilles family expects to host a watch party of the video with co-workers and some of Aurora’s former therapists. Later, they’ll receive mementos and a recording from the presentation, Nilles said.
“I think the whole view of people with Down syndrome is that they’re just like anyone else,” she said. “They know more than we know, I swear, from a love perspective.
“There are some old stereotypes that are outdated and there is some misinformation, so it’s to be able to advocate that they’re graduating from high school, serving in the Senate, graduating from college, starting businesses. They’re happy and go on to lead full lives.”
Aurora is using words and hand signs, although not yet speaking in full sentences, her mother said. At school, she’s in a small class with one teacher. Three school district therapists work with Aurora and other students.
“When she masters her skills, then they will integrate her into any typical classroom. She’s learning colors, emotions, shapes, early life skills.
“She comes home with this bubbly attitude, and you can tell that school is filling her. Aurora is eager to learn, and she loves everybody. She will just hug you.”