Smiles and tears in teen’s second bout with rare disease

Buffalo teenager's 2nd battle with rare disease

Avery Russek, 17, is fighting an extremely rare autoimmune disease called opsoclonus myoclonus, a condition she was first diagnosed with at 3 years old. FOX 9's Corin Hoggard has the full story.

BUFFALO, Minn. (FOX 9) - A Buffalo teenager is smiling through an extremely rare medical condition that’s taken away control of her body twice now.

FOX 9 first reported her story sixteen years ago when she was a toddler, and when we checked in again this week, we found fear, a long-awaited answer, and more smiles.

Autoimmune battle

Smiles and tears:

Crying is not Avery Russek’s natural state — not as a toddler in 2009, and not as a 17-year-old today.

But she’s shed some tears over a mysterious ailment that literally knocked her over, and made her eyes and arms twitch.

About 16 years ago, she came here to Children’s Hospital, where they diagnosed her with Opsoclonus Myoclonus — an autoimmune disease usually simplified to OMS.

But they couldn’t figure out whether a virus or a tumor brought it on.

"We did extensive testing to look for any kind of a tumor, and we didn't find a tumor that could be intervened on," said Dr. Abby Boetticher, a pediatric neurologist who worked with the Russeks in 2009 and has followed Avery's progress ever since.

Smiles and tears in teen?s second bout with rare disease

A Buffalo teenager is getting treatment for her second bout with an extremely rare medical condition that can literally take away control of her body. In 2009, FOX9 covered the treatments that helped Avery Russek slow opsoclonus myoclonus, an autoimmune disease.

Following the fight

A winning streak ends:

FOX 9 was there as she underwent treatment to battle OMS.

Avery was in remission by age 3, and she doesn’t remember much about the fight.

And she didn’t really like seeing the news story on YouTube.

"I was crying and just was scary to watch cause I was like, I don't remember this and to think that I could go back," she said.

Eventually, it did come back.

About a year ago, she started noticing some eye twitches.

"As it started happening more and more, I started noticing like the arm twitches," Avery said.

A new battle

Older helps:

But now, unlike in 2009, Avery can describe the symptoms herself.

"That was a big bonus on being able to present that to the doctor," said her mom, Jill Russek.

A new set of scans identified the likely cause — a tumor nestled between her pancreas, a kidney, and a couple major arteries.

"We were very scared because you hear ‘tumor’ and that's the worst word you can hear," said Jill Russek. "But it was almost like we have an answer. We finally know after 15 years."

Surgeons surprised everyone by completely removing the tumor without damaging the organs.

Disrupted days

Finding support:

But ongoing treatments disrupted her junior year at Buffalo High School where she’s in the National Honor Society, plays volleyball, and especially loves theater.

"It's an escape, that's for sure," Avery said. "It's the best escape, in my opinion."

An escape and a support system, including boyfriend and fellow thespian Vincent Johnson.

"Just knowing that she's got somebody," he said.

The school’s theater leaders are planning a big fundraiser next month — email andreakrinke@buffalotheater.org for details — giving Avery another reason to cry, but happy tears this time.

"You never know what's going to happen in life, and you can throw you the biggest curveballs, but just keep smiling," she said.