Kristen Steffen is on a mission to break negative stereotypes about those around the world with Down syndrome.
Kristen and her husband, Tom, welcomed their third child, Lila, to the world a little over two years ago. Born three weeks early, she is the little sister to her sister Ella, now 7 years old, and her brother Jack, now 4 years old.
As Kristen says, caring for Lila is no different than caring for her other two children – they each come with their own unique challenges as they’ve gotten older and continue to grow up. But for some people, they will notice one glaring difference about Lila; she has Down syndrome.
“We’re working on showing that Down syndrome isn’t sad or scary,” said Kristen. “That’s a lot of what this is all about.”
The Steffen family, from Voorhees, was recently selected to be featured on a jumbo screen at Times Square by the National Down Syndrome Society during its annual Times Square video presentation Saturday, Sept. 14, that kicks off Down Syndrome Awareness Month the morning of the NDSS Buddy Walk in New York City.
According to a release by the NDSS, the video presentation of photos of children, teens and adults with Down syndrome working, playing and learning alongside friends and family “promotes acceptance and inclusion, which is the foundation of the NDSS and the National Buddy Walk Program,” while helping to remind people of the contributions, accomplishments and value of people with Down syndrome.
The Steffens’ photo of the three children wearing matching striped outfits was selected from more than 3,000 entries to appear alongside nearly 500 additional photos throughout the presentation in the Times Square video.
Kristin says, in doing so, she hopes to promote a more positive image for those with Down syndrome, especially when it comes to soon-to-be-parents learning prenatally their child might have Down syndrome.
“It’s done in a very sad tone. We experienced that just two yeas ago when we were told that Lila may have Down syndrome prenatally,” said Kristen. “The doctor was very sad, very negative. There are a lot of negative connotations about it. They say that people with Down syndrome have a lot of negative medical problems, but that’s simply not the case for every child.
“There are many people with Down syndrome that live happy, healthy, productive lives and that’s the message that they’re showing through this presentation.”
After being born two years ago, Lila was given immediate medical attention with additional assistance than might be expected for a newborn. At the same time, Kristen says she and her husband were informed by numerous doctors about what to expect moving forward in the hospital with Lila, such as the need for a feeding tube and oxygen.
Despite the “list of negative things” that the Steffen parents were told, Kristen says Lila was off oxygen within 24 hours of being born and has since not required oxygen support. Within two days, she was able to take nourishment by mouth, dropping the feeding tube, and left the hospital to go home within a week of being born.
Essentially, every challenge that Lila’s parents were made aware of, she tackled and broke in outstanding time.
“That’s just kind of been Lila from the very beginning,” said Kristen. “She’s just always kind of proved everyone wrong.”
Now nearly two and a half years old, Lila uses more than 30 signs to communicate, such as how to request food and drinks and to distinguish between certain animals or objects, while also knowing 20 words, such as names or easy objects.
“She is so sweet,” said Kristen. “She is just an absolute joy, we feel so lucky that she’s our daughter. We have to raise awareness … when I was pregnant, the doctor was so negative about her possibly having Down syndrome and how hard our lives were going to be, and our life isn’t hard at all. Nothing about Lila is hard. We have three kids and they all have three very different needs.”
Lila is also an ambassador for the global organization Nothing Down, another organization that seeks to promote positive messages about individuals with Down syndrome.
“She’s a person just like anyone else, and that’s what is most important for us,” said Kristen. “That people recognize her as a person first.”
