Waconia Family Runs To Raise Awareness For Rare Brain Syndrome

WACONIA, Minn. (WCCO) -- The cooler temperatures and changing leaves provide the perfect backdrop for marathon season in Minnesota. But for one Waconia family, race days don't end at the finish line.

Like many runners, Nik and Christy Feist ran marathons and other races for years as a form of solitary therapy.

That is, until six years ago, when their second daughter changed their course.

"I just knew something was different," Christy Feist said. "I could tell right away that something was different about her."

Annika measured small from the start. She weighed barely five pounds at birth. Still, doctors weren't overly concerned.

But when her head measurement started to fall off the growth chart at two months old, an MRI confirmed the worst.

"Our lives pretty much got turned upside down that day," Christy said.

Annika is missing part of her brain. The piece that links the right and left halves.

The diagnosis is known as FOXG1 syndrome.

"I never gave a Fox a second thought before Annika came around," Christy said, in her home filled with stuffed foxes.

Annika's case is one of 376 in the world.

"She has the inability to speak, feeding issues, epilepsy, she's non-mobile, so she'll be in a wheelchair," Christy said.

But Nik and Christy have made sure her life isn't measured in what she can't do.

"We wanted to have the same opportunities for Annika despite having the FOXG1 diagnosis," Nik said.

Now, they all run together as a family.

"We started pushing her in 5k's and kids races by the time she was six months old," Christy Feist said.

Annika's 9-year-old sister, Sophia, is also in stride.

"Just being able to enjoy the things that are important to us as a family, being able to have Annika be a part of it, too," Nik said.

In a way, they've been surprised at just how happy it seems to make her.

"We say it's race day, and she gets the biggest smile on her face," Annika said.

WCCO's cameras witnessed it last month, at Waconia's annual town celebration and 5K, where the Feists ran their ninth race as a family.

It's where their real mission becomes clear in a sea of racers. Their bright orange uniforms stand out.

The Feists want spectators to ask about Annika.

"The more people that know about it, are aware about it, the more fundraising we get and the closer we get to a cure," Christy said.

So other kids won't face the same road.

"I know it's probably not going to happen in Annika's lifetime, but FOXG1 is not going to go away," Christy said.

Already, marathoners have sported their orange across the country.

"I wish everyone could get to push her once and just have that feeling," Christy said.

The Feists hope to one day run the Boston Marathon with Annika.

The Tim Orth Foundation helped get her $6,000 wheelchair.

To learn how you can help kids like Annika and follow her races in the future, click here.