Avery Russek, 17, is fighting an extremely rare autoimmune disease called opsoclonus myoclonus, a condition she was first diagnosed with at 3 years old.

Buffalo

A teenager from Buffalo is experiencing a second struggle with Opsoclonus Myoclonus Syndrome (OMS), a rare autoimmune disorder that first affected her as a toddler. After years in remission, she began noticing symptoms again, which led to the discovery of a tumor near her pancreas and kidney. Surgeons were able to remove the tumor without damaging nearby organs, providing a long-awaited answer for her family after years of uncertainty.

Despite ongoing treatments that have disrupted her school life and extracurricular activities, the teenager remains positive, supported by her family, friends, and school community. Local theater leaders are organizing a fundraiser to assist with her medical needs, and she continues to rely on treatments made possible by blood donations.

Buffalo teenager's 2nd battle with rare disease

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 of her story 16 years ago when she was just a toddler. Fox 9's Korn Hauger did a checkup today and he found fear, a long-awaited answer, and more smiles. Crying is not Avery Russick's natural state. Not as a toddler in 2009 and not as a 17-year-old today. But she shed some tears over a mysterious ailment that literally knocked her over and made her eyes and arms twitch. 16 years ago they brought her here to Children's Hospital and doctors diagnosed her with Opsiclonus Myoclonus, which is an autoimmune disease usually abbreviated to OMS. But at the time they couldn't figure out if it was a virus or a tumor bringing 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. Fox 9 was there. She underwent treatment to battle OMS. Avery was in remission by age three and she doesn't remember much about the fight. And she didn't really like seeing the Fox 9 story on YouTube. I was crying and it just was scary to watch because I was like I don't remember this and to think that I could go back is. Eventually it did. About a year ago she started noticing some eye twitches. As it started like happening more and more I started noticing like the arm twitches. But now unlike in 2009. The problem is we don't know what she's feeling inside. Avery can describe the symptoms herself. That was a big bonus on being able to present that to the doctor. 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. 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. 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. 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. The school's theater leaders are planning a big fundraiser next month giving Avery another reason to cry but happy tears this time. You never know what's gonna happen in life and you can throw you the biggest curveballs but just keep smiling. Smiling and donating blood. It takes antibodies from hundreds of people's blood to make a single treatment for Avery. In Buffalo, Corin Haugard, Fox 9.

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