Johnston Graduate Hosts Benefit to Raise Money for Medical Costs, Raise Awareness for Rare Tumor

An ordinary day in class changed Kaitlyn O'Toole's life forever.

The college sophomore was resting her chin in her hand while taking notes in class when she started to feel a pain in her jaw.

"After several confusing appointments on what it could be, I went into surgery and found out I had a tumor," said O'Toole, who graduated from Johnston High School in 2008.

Now, two years later, O'Toole is trying to educate others about Central Giant Cell Granuloma through her project giantStrength and a number of benefits to raise money to cover medical costs insurance refused to cover.

Central Giant Cell Granuloma is a rare benign tumor that affects the jaws, it is most common in women ages 20 to 40.

"Ever since then we've been slowly finding our way through this mess," O'Toole, now 23, said of her five surgeries. "I had to have the tumor taken care of and a long reconstruction process."

And that process was anything but smooth for O'Toole. 

O'Toole was set to have a bone graft surgery in March 2012, part of the reconstruction after surgeries that removed the tumor and another that removed a tooth and a portion of her jaw.

"It was just within a couple of days of the scheduled surgery that insurance said they wouldn't cover it," she said. "I had to cancel the surgery to see what we could do to fight it and see what options were available."

The first several surgeries to remove the tumor were covered by surgery but Kaitlyn and her family had to pay for teeth extractions soon after.

Because the reconstructive surgery was for her mouth, insurance wanted to consider the procedure dental.

"It was something we feel should be covered," she said.

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Since that first run-in with insurance, O'Toole, her family - parents Linda and Mark and sister Megen - and her boyfriend, Jacob Gerhardt, decided to take matters into their own hands by creating giantStrength.

giantSTRENGTH is an endeavor to build awareness for others by sharing O'Toole's difficulties trying to navigate the maze of the health insurance system and Central Giant Cell Granuloma.

"It started out as a far-out there idea," she said. "My boyfriend and I were both graphic design majors; we decided to use our talent in a great way."

The main goal was to have a booth selling designs, artwork and jelwery at the Garden Art Fair at Reiman Gardens at Iowa State University, where both attended college, this past July.

"Since then people have continued to support and reach out," O'Toole said.

She hopes giantStrength will contribute and help to minimize the direct expense on her family by raising $20,000.

O'Toole did have her bone graft surgery in August this year, but anticipates having two more reconstructive surgeries in the coming year before she's done.

Benefit Concert Set for Clive

The support continues this Friday with a benefit concert at the Bombay Bicycle Club in Clive.

Starting at 7 p.m. guests can enjoy a night of great music, artwork and drinks for a $6 admission. The lineup consists of: The Most Handsome Duo, The Esoterics, Liana, Holy White Hounds, and Chazzybear.

"I really hope that by letting people know our experiences and the difficulties through the journey that people going through similar things in the future can see the resources out there to reach out to," O'Toole said. "I want to empower people going through similar things."