After a North Adams couple lost their daughter to a rare childhood cancer, they push for more research | Northern Berkshires

NORTH ADAMS {span}— Kathy and Joe Arabia’s daughter, {/span} Anna Yan Ji Arabia, was diagnosed with gliomatosis cerebri, a brain tumor, at age 13.

When North Adams’ parents learned there were no promising treatment options, “I was shocked,” Kathy Arabia said.

“I have worked in healthcare for thirty years. [I] grew up in Boston, where there are so many great medical institutions that are known worldwide,” she said. “I just expected that they would have a treatment available. I knew it was serious, but not that they didn’t really have something they knew would be effective.”

The overall survival rate for gliomatosis cerebri is about 5 percent, according to the St. Jude Children’s Research Hospital.

Anna, a Drury High School student, died in 2013, several years after the tumor was discovered.

“Anna faced her rare brain tumor Gliomatosis Cerebri with astonishing vigor and never let it touch her mind,” reads her obituary.

“She was treated at Dana-Farber and received the best care available, but there were no treatments,” said Kathy Arabia. “That was unacceptable to us. After she passed away, we wanted to start a fund to help the investigation.”

North Adams couple Kathy and Joe Arabia founded the AYJ Fund, a volunteer-run organization that supports children with cancer and raises money for research. Recently, AYJ has partnered with several other foundations around the world to fund a research grant.

GILLIAN JONES—THE BERKSHIRE EAGLE

The Arabias founded the AYJ Fund, a volunteer-run organization that supports children with cancer and raises money for research. Recently, AYJ has partnered with several other foundations around the world to fund a research grant.

dr. Mariella Filbin, a neuro-oncologist at Dana-Farber Cancer Institute and Boston Children’s Hospital and an assistant professor of pediatrics at Harvard Medical School, is one of the researchers leading the funded project.

Gliomatosis cerebri is “cruel,” Filbin said. The tumor cells grow between brain cells and not in one mass.

“There’s no apple or orange in your brain that you can cut out,” Filbin explained. “They don’t destroy the structures that are there. They go in every available space.”

The research focuses on gliomatosis cerebri in people under the age of 20 and aims to better understand the tumor cells and develop new therapies, Filbin explains.

As a young doctor, Filbin hoped that treatments would come. But as she gets older, it gets more painful, she said. “Every patient is one too many. I want to give them all the chance to live a full life, and not being able to do that right now is incredibly, incredibly painful.”

She added that the research is “not just interesting. This is urgent. This urgency is what I feel even more as I get older with each patient journey, and that makes it even more painful.”

With the research, “I really hope we can find a new class of therapeutic drugs for GC,” Filbin said. “I don’t know how long it will take to get there.”

Anna would have turned 25 in April, and the Arabs continue to raise money and work on programs to support children with cancer, such as giving them technology to keep in touch with friends.

GILLIAN JONES—THE BERKSHIRE EAGLE

Anna would have turned 25 in April, and the Arabs continue to raise money and work on programs to support children with cancer, such as giving them technology to keep in touch with friends.

“Financing is a challenge, but we have had tremendous support from our local community,” said Joe Arabia.

This summer, the AYJ Fund held a concert at Balderdash Cellars in Richmond, raising over $10,000, according to the Arabias.

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