Family walks tall together

For 6-year-old Aiyana Tegels, Wednesday was no ordinary day. She underwent surgery in St. Paul to remove corrective apparatuses from her legs that she's worn since late February. Expected to help Aiyana walk normally, the surgery was the culmination of a long journey that started when she was 6 months old, when her mother first noticed her daughter had trouble sitting up.

"That's when we kind of noticed that her little feet weren't working the way they should," Ashley Tegels said at the family's home in Barnum.

"As a baby, her shoes wouldn't stay on her feet," Ashley added. "I couldn't figure it out."

Ashley and Aiyana were joined in the living room by Dane Kiehn and the couple's 2-year-old son Derk. Axel Tegels was in a nearby room. When the question of the third child's age came up, he shouted, "I'm 8!"

Breakfast was served, and the bacon was getting cold as the couple talked about Aiyana's health condition and expectations for the outcome.

"This is lifechanging," Dane said. "It's impossible for someone to realize how hard this is not just for Aiyana, but [on us] as a support team. It's been a tough journey."

Doctors, even top limb lengthening specialists, haven't ever been able to diagnose the condition that causes the Tegels and Kiehn children to walk on their toes - none more severely than Aiyana - but they know what's happening. In Aiyana's case, it's Achilles tendons that are so tight that her ankles lock, forcing her onto the tips of her toes.

Doctors have said her condition shares traits with one diagnosis or another, but her condition is so severe it's rarely seen, the family said.

"This has been a hard thing for her especially," Ashley said. "But to not know what causes this has been tough for me to cope with - not having a medical diagnosis even though there's something wrong."

Ashley's dad and aunt both walked on their toes, but grew out of it, she said. A three-sport athlete in high school, Ashley never had a problem with her gait. The children have undergone genetic testing, MRIs and CT scans, but nothing has yielded a definitive answer.

Fortunately, that hasn't stopped the medical profession from attempts at correcting it. Axel wears hard plastic braces on his feet and ankles and does physical therapy stretches nightly, but even so he still needs cues from his parents to walk flatter.

For Aiyana, the corrections have been numerous. At 1½ years old, she had surgery to lengthen her Achilles tendons. The remedy worked until it didn't, as her body began to grow faster than her tendons.

She's worn walking casts at various times to fix her feet into place. She had Botox treatments and underwent physical therapy until the pandemic, when the lack of therapy caused her to revert to square one.

"She's had to do lots of Botox injections," Ashley said. "It basically relaxes the tendons and they would do the casting to stretch her out again."

She first started receiving medical attention in Duluth, but moved to Gillette Children's Hospital in St. Paul after local doctors advised specialists there.

In late February, she underwent surgery to implant 16 pins, eight in each leg, that anchored external fixators around her lower legs and feet.

"They did little cuts into her tendons on the bottoms of her feet and Achilles when they put them on," Ashley said, "to help stretch them, because they were so tight."

Every day, five times a day, the couple would turn a nut one full revolution, slowly allowing the mechanisms to take her feet from their pointed position toward where her feet are now, in a flatter state.

"The doctor that did the surgery - Dr. Mark Dahl - his exact words were, 'I'm amazed at what she's done with this. She'll be dancing and singing in no time.'" Dane said.

Ashley isn't so sure yet. This week's surgery will be followed by at least two weeks of casting, then hard plastic braces and physical therapy.

"The first surgery when she was little was supposed to be the answer, and that didn't really stay with her," Ashley said. "I worry about this being a lifelong thing."

As much as a physical journey, the emotional aspects of the kids' condition also has been a toll on the family. They hear what's said about their kids.

"It's hard on the parents, when your kid is different, to hear people call them out on it," Dane said.

His fellow Little leaguers will introduce Axel to others by saying, "He walks on his toes." Adults who see Aiyana often describe her as a ballerina.

"I've never heard anyone purposefully bully or be mean about it, it's more just the fact that it's insensitive," Dane said. "You don't want to hear your kids' differences pointed out on the regular."

"Like, every day," Ashley added.

Her most recent surgery left Aiyana using a wheelchair to get around.

"I can scoot, too," said Aiyana, who was bubbly and eager to play video games.

Prior to surgery, finding the right footwear was difficult.

"The only shoes we could find that would stay on her feet were rain boots," Ashley said. "People couldn't really tell she was on her toes. But we'd get the comments when she'd take them off - 'Oh, she's a ballerina.' That was hard to hear because it's a medical condition. I'm very sensitive to it because she was in pain because of it. She couldn't do sports or keep up with everyone else."

Ashley is a social worker at Fond du Lac Tribal and Community College, and Dane works for Minnesota Power. They've been able to manage medical bills without any crowdfunding.

"We try to be as independent as we can," Dane said.

But when it came to caring for Aiyana these past few months, it's been a community effort. Each set of the girl's grandparents pitches in watching the kids. Dane's got a brother who babysits. Aiyana required the assistance of two paraprofessionals during the school year, when she finished kindergarten.

"Aiyana has a lot of fortitude," said Barnum teacher Shelly Pritchett. "She has a lot of spunk. She is going to power through with what she is capable of with some good energy."

Indeed, the family draws a lot of inspiration from the way Aiyana approaches difficulties.

"You've had an amazing attitude," Ashley said, turning to her daughter. "Even when she was a baby and she had full leg casts she found a way to move around. She's always found a way to be mobile."

While wearing the external fixators, Aiyana had to be carried into vehicles, required showering and toileting assistance and couldn't wear socks, needing blankets when she went outside during winter. She also had to avoid recess.

It's been a lot. The hope is she's on the path to a normal life.

"As close to normal as she can get," Ashley said.