MINETTO – One percent. One in 700. Three. 21. One in 500. One in 29. All these numbers refer to one little boy, age two-and-a-half, with Down syndrome, a condition defined by an extra, third, 21st chromosome, a condition that has been stigmatized and misunderstood for as long as it’s existed. And that little boy, with the rarest form of the syndrome, found in only one percent of the one in 700 children born with Down syndrome, is out to change all that.
Nicholas Goewey of Minetto is now one of 29 ambassadors in the world, named out of 500 applicants, to represent Nothing Down, an international organization dedicated to ending that stigma, promoting understanding and acceptance, and showing the world the potential of people with Down syndrome.
“I noticed on their Facebook page that they said ‘Hey, we’re doing a call for ambassadors,’” Nicholas’s mother, Mary said in a recent interview when asked how this ambassadorship came about, “and I knew that every year they had a ton of people that applied. But, the first step is just posting a picture and saying how old they are. So, I did that, and then I received a reply saying that they wanted to know a little bit more about us, and I sent that in, and the next thing we knew, he was picked.”
At two-and-a-half, already an ambassador. Quite the accomplishment. And it didn’t even take a huge donation to an election campaign.
As an ambassador, Nicholas and parents Mary, 29, and Nick, 30 will mostly be doing fundraising, social media outreach, and generally raising awareness.
“Each ambassador is supposed to do some kind of money-raising whatever,” Nick said. “A year ago, we raised money by selling shirts for World Down Syndrome Day.” That was before Nicholas rose to his current title.
This year, the Goeweys have even bigger plans.
“We’re going to do a class tour on March 20, the day before World Down Syndrome Day so that we can share Nicholas’s story with some of the buildings,” said Mary, an Oswego school district elementary teacher.
That will be followed by a school district fundraiser.
“The reason this school district fundraiser is so important,” Mary said, “is because in our district we have five elementary schools and one middle school and one high school. I want the district to be more informed about Down syndrome, because once you get to the Middle School, Minetto and Volney are the only two who’ve even heard about Down syndrome before. So, I’m so glad this is an opportunity to get the whole district involved, kind of laying the groundwork for Nicholas to have a good school career. He is starting pre-K in the fall. Every year when I teach my kids (students) about it, none of them have heard of it.”
Raising that awareness has become a family mission.
Nick, a barber at Good Guys barber shop in Oswego, talks often with his customers about Down syndrome and Nicholas as he’s cutting their hair.
“Some of them are very informed,” he said, “and some of them not at all. Some of them know nothing. Everybody knows a little bit.”
With some couples, you wonder what they ever saw in each other. Others are so in sync. Mary and Nick could finish each other’s sentences.
“Everyone knows a little bit,” Mary reiterated, continuing Nick’s thought, “I think that comes from their education, ‘cause when I went to high school, the people with Down syndrome were in a different classroom, they went to a different lunch, and it’s not like that now, it’s fully integrated. I didn’t get the opportunity to know anyone with Down syndrome even though they went to my high school. I only knew what it was. I didn’t know anything about it.”
And there’s a lot to know, and there was a lot to face when Nicholas was first diagnosed.
“When Nicholas was born,” his father, Nick said, “we had no one to turn to. And there’s no information other than poor information, like the negative side of it. So, you don’t really know what to do. All of a sudden, you have this diagnosis and you’re like, now what? And you look into it, you type into Google, and it’s scary. But, it’s really not. It’s no big deal. It’s just nobody talks about it.”
They got the diagnosis of Nicholas’s Down syndrome six days after he was born.
“But the nurses and doctors in the hospital were telling us of their suspicions about 24 hours after he was born,” Mary said.
“They (the doctors and nurses) came in and sat us down and told us what they thought was going on, but they couldn’t tell for sure,” said Nick.
“The doctor even went back to our ultrasounds again,” Mary said, “because he felt kind of blindsided too. He said he didn’t see anything in any of the tests (before Nicholas was born) that indicated Down syndrome. Even that blood test that’s supposed to tell you about any genetic thing didn’t show anything.
“One percent of kids who have Down syndrome have the type that Nicholas has, which is mosaic Down syndrome,” Nick said, “which is the reason in the hospital they weren’t sure if he had it or not, and all it means is that his face is symmetrical.”
“And you can tell also by those white fleck marks on his eyes, ‘brush marks,’ they call them,” Mary added.
The only test that seems to be reliable is amniocentesis, “but it’s invasive and risky, because you could lose the baby,” said Mary.
“Doctors are just doing their best,” said Nick.
Mary and Nick talk about Down syndrome easily now, but it wasn’t always so easy. They started by looking for information online.
“There are groups that exist,” Mary said, “but when you first receive the diagnosis, you don’t really feel comfortable just jumping right into the life. You still have to process it at first. So, being able to just look from the outside in online, rather than actually going somewhere is a lot more comfortable and a lot safer feeling for us to do.”
And after becoming more familiar with what Down syndrome is all about, they realized what others may be going through. And they understood how maybe it isn’t so easy for other parents either.
“One day we were at the mall,“ Mary said, “and we saw a young couple and they had a baby and we noticed the baby had Down syndrome. And we wanted to say something to them, and we didn’t know how to open that conversation up. Maybe they were still not wanting to talk to people yet, so, we wanted to have a way to just sort of give them our contact info.”
And so, they made business-like cards to hand out, should that sort of situation ever come up again. The cards give their name, phone number, and the address of Mary’s blog at www.limitlessnicholas.com, and say, “Spreading Down Syndrome awareness and acceptance by sharing our true stories.”
And they have a lot to share, and so much of it is good.
“I feel lucky that we live in a state that has so much support,” said Mary. “We have the early intervention therapist come to our house or his babysitter’s every single day. He stays engaged for the whole session, which always makes me proud.
“He’s been learning really fast lately, which has been exciting. He loves to learn stuff. He tries every single thing the therapist asks him to do. He’ll sign to me something, and I’ll have to call the speech therapist ‘cause I don’t know what the sign means.
“I love that he can tell us. He communicates his needs just fine even though he’s not talking yet.”
That’s right. Nicholas is learning sign language.
“Since he has Down syndrome, he’s going to learn to talk late,” said Mary. “That’s just the reality. Babies with Down syndrome have low muscle tone, and the muscles in your mouth, there’s a lot of them in there, and you don’t consider that. And kids with Down syndrome also have small features on their face, but their tongues are typical size. So, their tongue is taking up a little bit more space in their mouth than ours. So, they want to give him the tools to be able to tell us what he needs. He should be able to tell us when he’s hungry without getting frustrated or only knowing how to grunt.”
And so, the speech therapist also teaches Mary and Nick sign language.
Nicholas just learned to walk within the last two weeks, again because children with Down syndrome have low muscle tone. But he walks like he’s been doing it his whole life.
“He just did it at his own pace,” said Nick. “It’s all the same steps as a typical child, it just took a little extra year.”
To say that Mary and Nick have accepted Nicholas’s Down syndrome is not only an extreme understatement and completely redundant, it really rather misses the whole point, just as many people who meet Mary and Nick completely miss it.
“Everyone you tell them ‘my son has Down syndrome,’ their first thing is a condolence face,” said Mary, “and I don’t know how to react to that.”
Because this is about pure love.
“The guy who discovered Down syndrome, his last name was Down,” said Nick. “He figured out what it was, so they called it Down syndrome. There’s nothing down about it. It’s just the guy’s last name. People associate Down with something that’s negative.”
As the Nothing Down organization says, “There’s Nothing Down about Down syndrome.”
“Online all these families are showing life’s not that much different when you have a child with Down syndrome,” Mary said. “All we really want people to know is that there’s nothing bad about having a child with Down syndrome or scary. He’s just so great. And if you know what having a child is like, then you know what having a child with Down syndrome is like. It’s pretty similar.”
Nick is pretty covered with tattoos. Mary seems to have only one. It’s on her forearm. Nick has the same tattoo on the side of his hand. It’s three v lines, one above the other pointing up.
“It stands for the three copies of the 21st chromosome,” Mary said. “But it also represents, it’s like an arrow, when you’re given this diagnosis, you get pulled back a little bit, and then you’re just going forward from there.”
“These arrows represent moving forward,” said Nick, and Mary finished his sentence in perfect sync, “after spending some time getting pulled back.”
So, when people ask them, ‘why do you have that tattoo, what does it mean?’ Mary said, “it starts the conversation.”
And then it begins, with numbers, and facts, and stories, and statistics. But really, in all this, there’s only one number that matters, the number any parent would say of their child with a smile and the number Nick and Mary would proudly beam about Nicholas.
I saw him with my own eyes. I watched him. I was amazed by him. Like every child, he’s one in a million.