Westerville father spearheads effort to fund research for daughter's disorder

Victoria Cooke

WESTERVILLE, Ohio - Victoria Cooke can't wait for 6th grade. After all, that's when she will finally get her own locker. But the 11-year-old admits school is not always her favorite, a sentiment shared by many children her age, of course.

She'd rather spend time on the trampoline, in dance class or playing volleyball. What she doesn't like to do is visit the doctor's office.

"I don’t like to focus on the tough things because it just worries me more, so it makes me want to know what’s going to happen and stuff," Victoria said.

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That's because the future holds a lot of unknowns. About two years ago, Victoria's brother noticed her eye was a little puffy.

A trip to the eye doctor led to the discovery of a large tumor behind her right eye and eventually a diagnosis of Neurofibromatosis Type 2, or NF2. The rare genetic disorder causes tumors to form on nerves, leading to hearing loss, vision loss and paralysis.

"I pray about it, and my friends, just having fun with my friends helps me not to think about it," Victoria said.

Someone who has been doing a lot of thinking about it though is Victoria's father, Steve Cooke.

"It’s been gut-wrenching for all of us," Cooke said. "My initial response, personally for me, was to dive in and learn as much as I possibly can about this."

And he did, eventually teaming up with NF2 BioSolutions, an organization raising funds for gene therapy research. Cooke is now a member of the board.

"My faith and my strength in God has helped guide me with pursuit of what we are in pursuit of – give me strength to get through this day, show me the way to help, where do I need to put my energies to help pursue this gene therapy," he said.

The work of NF2 BioSolutions is now paying off in a big way. Last Friday, the organization signed a research agreement with the Abigail Wexner Research Institute at Nationwide Children's Hospital for a pre-clinical study. The $300,000 from the group will fund two research positions for two years. To keep it going after that, more money will be needed.

That's why Cooke is determined to keep raising awareness and donations. He believes the corporate community in Columbus could be the key.

"Thus far, doors have been opened, and there’s hope that we can come up with something," he said. "The outlook? Optimistic. Hope, you know. It’s not just – wait and see what happens on the bad side. Let’s wait and see what happens on the good side."

In the meantime, Victoria says she feels the support from her dad, mom, two older brothers and friends. She also communicates via WhatsApp with other NF2 patients.

She also is keeping all of her hospital bracelets to use in a scrapbook documenting her journey with NF2. Some are from the MRIs she has had to have - her least favorite procedure.

But she manages to keep a focus on the future.

"I'm glad that we have a hospital working with NF2 BioSolutions to find a cure," she said.

  • To find out more about NF2 BioSolutions, click here.
  • To find out more about donating to the cause, click here.