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Living with Down syndrome

Fewer children with Down syndrome are being born in Denmark, and there’s been a consistent drop in the country since 2006, when prenatal screening was first introduced for the genetic condition.

“Before testing was introduced, about 60 children with Down syndrome were born each year,” according to the Danish newspaper Kristeligt Dagblad. “In only three of the 23 cases of Down syndrome last year were the parents aware ahead of time that the child would be affected by the condition.”

The statistics surprised Mario Wezel, a German photographer who moved to Denmark for a year to study at the Danish School of Media and Journalism. He said the decrease in births didn’t fit the idea he had of Danish society.

“A wealthy state, where the happiest people in the world live, implements new technologies - and the decrease is the consequence of that?” he said. “Almost all Danes take the test when they are pregnant. I found it to be strange to really want to know so badly what you will expect from your future child, even though the percentage to have a child with disability is very low.

“It felt like a whole society is striving for straightening out the twisting way of life.”

Down syndrome is a genetic condition that affects cognitive ability, causing mild to severe learning disabilities. It is known for its distinctive facial characteristics.

It’s also the focus of Wezel’s photo essay “One in eight hundred.”

In April, Wezel found a 5-year-old Danish girl named Emmy through a website for parents who have children with Down syndrome. He met the girl’s parents, Karina and Martin, who were told during prenatal screening that Emmy had a one in 800 chance of having Down syndrome. They eventually agreed to be photographed.

“It was nice, since the family has this great way of interacting with each other,” Wezel said. “They are very focused on each other, so I could just shoot as I wanted to but also be part of the everyday life if I took the camera down.”

On his first day of shooting, Wezel was shocked by Emmy’s friendliness, saying she treated him like an old friend.

“These days, we are really not used to acting like that with a stranger. But due to her disability, Emmy is incredibly open towards strangers and very warm-hearted,” he said. “She gives so much without asking something in return. This way of seeing the world gave me so much.”

Wezel was easily able to establish a bond with Emmy and her sibling Kristian, saying that even though he didn’t speak Danish and they didn’t speak English, they became good friends and figured out other ways to communicate.

He initially photographed the family every week for about two months. They stayed in touch after he moved back to Germany, and they have been exchanging visits since. Wezel says he will continue the project over the next few years.

In kindergarten, Emmy was the only child with Down syndrome in her class. She benefited from the experience, but Wezel says the other students benefited as well.

“I think that she can teach the other kids something that is very important: being focused on one thing and being in the moment and just enjoying what is there,” he said. “I think that these days, with all the possibilities we have, it is necessary to have people like Emmy who can show us just how to be there and not think or strive of all the other things that could, should or would be.”

Emmy’s parents both work full time, but they still manage to spend as much time as they can with their children. Wezel was very impressed with their way of handling the complications of a busy life and a child with special needs.

“I think that since Emmy just takes longer with most things, she experiences the world around her in a different way. Her parents also give her the time she needs. They allow her to be a child and to just be,” he said.

Wezel’s photographs emphasize the interiority of Emmy’s world: a rich, sensory world where time has a different quality.

In developing his approach to the project, he talked a lot to Emmy’s parents to understand Emmy’s view of the world and how her behavior influenced daily life.

“I didn't set out so much to show what life with a child with Down syndrome looks like, but more how it feels like,” he said. “I believe that, as photographers, we don't need to show the viewer everything one by one, we don't need to describe. It is more about creating empathy.”

- Rebecca Horne, Special to CNN