In Depth

Unusual Kid, Difficult Choice

KARE-TV Story Puts Human Face on Rare Syndrome

As a general assignment reporter for KARE-TV, the NBC affiliate in Minneapolis, Joe Fryer does all kinds of pieces about all kinds of people. “I’m a GA—general assignment, features, political, whatever needs to be done. I cover everything,” said Mr. Fryer. As part of that everything, one story Mr. Fryer got to tell was “Nick’s Choice.”

“It is in essence a health care story, but I did it as a human interest story,” said Mr. Fryer. “It was really about following this kid through his journey, and that’s my favorite part of telling stories…. I applied many of the same things that I apply every day.”

For “Nick’s Choice,” Mr. Fryer and photographer Brett Akagi have been awarded second place in the TV/radio (top-20 markets, network, syndicated) category by the Association of Health Care Journalists.

“We’re very happy, Brett and I,” Mr. Fryer said. “It’s really great to see the story recognized on the national level where so many networks and so many big news agencies were entering.”
Nicklas Nelson is a 9-year-old boy who was born with a rare condition, popliteal pterygium syndrome. “It’s fairly complex because it’s not the same in every patient. It’s a kind of weird syndrome. The most common feature is the webbed legs,” said Mr. Fryer.

Nick chose to have his right leg amputated when surgeries and procedures could not repair the congenital defect. “A lot of people have never heard of his syndrome before, so we had to do some research on the syndrome and learn a little more about it,” Mr. Fryer said. “We made sure to go over the details and spoke to the doctors about some of the details. It was complicated to explain why Nick’s right leg didn’t straighten very easily because the back of his knee joint was gone. Getting too much into that would have been too confusing for the viewers. We had to include it in the story and be very accurate about how we were telling everything.”

Mr. Fryer got involved with Nick’s story when he received a call from a woman at the Gillette Children’s Hospital public relations department. “I had done stories with her, and so when she heard about Nick, she first went about asking the family if they would be interested if the media followed them,” Mr. Fryer said.

When Nick’s mother, Mary, a nurse, and his father, Joe, approved, KARE management gave the reporting team the go-ahead. “I really liked the story, pitched it to my bosses, and we ended up pretty quickly putting it together because there wasn’t much time before the actual surgery that Nick was going to have,” Mr. Fryer said.

Getting up to speed meant doing research and consulting with Nick’s family. “It was checking with the doctor, checking with the PR person, working with the family, especially Nick’s mother, who is very, very knowledgeable,” said Mr. Fryer.

The story was called “Nick’s Choice,” but it was a family decision to do the surgery, including Nick’s older sister, Naomi, who is in remission from leukemia. “They all agreed on it, not just Nick. The one who needed convincing was the doctor. He wanted to try every last option first,” said Mr. Fryer.

Perhaps the toughest aspect of this health care story was connecting with the child. It was Nick’s story, after all. “We were definitely very friendly with the family, especially with Nick, in order to get him to trust us. As much as his personality comes out in the story, it takes a while for him to warm up with people,” said Mr. Fryer.

And the reporter is quick to give much of the credit for the success of the story to photographer Brett Akagi.

“Certainly the night before the surgery, when Nick was having second thoughts, doubts, that was probably the toughest time. I just stood out of the way and let Brett move the camera around to the angles that he did. He respected their space and they were fine with that,” Mr. Fryer said. “Our job was to observe at that point, and that’s all we could do. They let us be there. We believe in being as human as possible with our stories, to treat people as real people, not just a subject.”

Despite his second thoughts, Nick wanted the surgery and went through with it. He had his right leg amputated and the KARE reporters have stayed in touch with him. “He’s doing great. He has no regrets about the choice he made. He had to go a couple of months with no leg basically while the stump was healing. Around Christmas he got his prosthetic and we were with him when he took his first steps,” said Mr. Fryer. “His mom broke down in tears. She said, ‘I got to see my child take his first steps twice.’ It was an unbelievable magic moment. The excitement in his face; he was overwhelmed by the fact he was able to do it. … It was great to be documenting all those moments.”

Repurposed on NBC
After KARE ran the original seven-minute version of “Nick’s Choice,” the network became interested in carrying the story as well. A shorter piece was broadcast on “NBC Nightly News” and later on “Today.”

Mr. Fryer and Mr. Akagi were overwhelmed by the response. “It’s been unbelievable, unlike any story that I’ve ever done. Tons of e-mails for us, and nationally, I don’t know how many,” Mr. Fryer said. “They said it was unlike any feature story they’ve ever run from another affiliate before.”

The positive response to the story led to their decision to submit the video to the AHCJ. “One of our anchors forwarded the e-mail to me from the association [seeking entries] and we decided to enter the story ourselves and pay the entry fee. The Association of Health Care Journalists saw the longer version.”

Being recognized for a health care story has been rewarding for Mr. Fryer, but he didn’t do it to win a prize.

“This was a story that had to be told. It was about a decision, a choice, and it was a health care story in a lot of ways because every day people have to make critical decisions about their health care,” he said. “Some are a bit more immediate, some are life-and-death situations, some are like Nick’s choice where it’s a matter of would this give him a better life or not? That’s a hard decision for anyone to make, let alone a 9-year-old boy. That was an element of the health care part of this story, more than facts or statistics about the syndrome. Anyone can relate to this if you’ve had to make a decision about health care.”

You might think they’ve moved on, but Nick’s story is ongoing for Joe Fryer and Brett Akagi.

“We still talk to the family on a regular basis, especially my photographer, who was integral in telling the story. For Nick, it’s been incredible. He’s constantly getting calls from people to speak or make an appearance because people are so inspired by him. He was introduced at a Minnesota Timberwolves game, and he still has a decision to make about his left leg. It’s better, but he would actually like it removed. The doctor isn’t quite ready for that yet. It’s not over for Nick.”