MINETTO — Shannon Daughtry was pregnant when her doctor told her that her son was going to have Down syndrome. Within 30 seconds of receiving that diagnosis, the doctor offered to terminate the pregnancy.
Daughtry declined, she now has a five-year-old daughter, and in 2016, she co-founded the advocacy group Nothing Down to support parents of kids with Down syndrome and curb stigmas. Part of that effort includes trying to change the way the diagnosis is delivered.
“We don’t want them to paint it in such a negative light,” Daughtry said.
Nothing Down has 29 ambassadors from around the world who serve as “the face of Nothing Down.” Now among them is two-year-old Nicholas Goewey, of Minetto. The ambassadors have their photos and stories posted on Nothing Down’s website and appear in social media campaigns.
To be selected as an ambassador, a family fills out an application with pictures and tells Nothing Down about the advocacy work they do in the Down syndrome community. Daughtry said ambassadors are typically those who already do outreach work.
Nicholas already has a blog, Limitless Nicholas, and an Instagram page that has reached families in 26 countries, according to his mother, Mary Goewey. The Goeweys want to educate the public on Down syndrome.
Asked what she thought the strongest misconception toward people with Down syndrome is, Mary Goewey said “that they can’t do the typical things that other kids can do.”
“They can, it just might take a little longer and with a little more support,” she said.
Goewey said her son’s first physical therapy appointment was to help him learn to make a fist and that “now he’s running around the house throwing toys everywhere.”
“It just takes him a little longer but he succeeds at his own pace,” Goewey said.
The Goewey’s received Nicholas’ diagnosis six days after he was born. It was not confirmed until blood work was done. Goewey said the possibility that Nicholas had Down syndrome was not raised in the first 24 hours, but she believes nurses may have recognized early signs such as Nicholas not opening his eyes as much.
“It was our first baby and we just thought newborns sleep a lot,” Goewey said.
Since starting advocacy through social media, Goewey has spoken with many families that have been encouraged by a doctor or peers to terminate the pregnancy when they receive the diagnosis. She said that is especially the case in less developed countries.
Despite that, Goewey believes societal attitudes towards Down syndrome are changing. She points toward models with Down syndrome showing up in clothing advertisements and as characters in TV shows, but that is not their entire story. She also brought up the example of Zach Gottsagen, who starred in the 2019 film The Peanut Butter Falcon, and presented an award at the most recent Oscars.
Daughtry said one of Nothing Down’s achievements was the production of a documentary called Dear Doctor, which focuses on the negative connotation that comes with the diagnosis of Down syndrome. Daughtry said the film is shown in medical facilities now.
“I think that people automatically think ‘that child is going to be a burden,’” Daughtry said. “They don’t realize the potential. Several of our ambassadors are college graduates, that’s not the picture that’s painted in the beginning.”