Community rallies for Ava

By Beth A. Birmingham | Mar 12, 2018
Photo by: Beth A. Birmingham Ava Berry, center, and friends, from right, Adelaide Benner, front, Anna Posse and Aiden Abbotoni take a break from all the excitement at a fundraiser for Ava March 10. She has a rare but curable autoimmune disease called PANDAS.

Waldoboro — More than 200 community members attended a fundraiser March 10 to help a young girl battling a rare but curable disease.

Ten-year-old Ava Berry of Waldoboro was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection, or PANDAS, nearly three years ago, and she and her family are hoping to raise enough money for a very expensive treatment that has been proven to be a cure.

"I am in complete amazement of the outpouring of love, kindness and generosity that the community, friends, family and acquaintances have shown," Jessica Berry, Ava's mom, said at the event, which was organized by friends and coworkers and held at the Waldoboro VFW.

"I am so happy with the awareness that has been spread and hope to start meeting with other families in the area," she said.

Although PANDAS affects one in 200 children, doctors are skeptical and unwilling to treat it, Jessica said, and insurance coverage is practically nonexistent.

After a regression period a couple of weeks ago, Jessica said, Ava's newest medication appears to be working.

"We're just holding our breath," she said. "We don't know if it will last."

The Berrys have an appointment in May with a neurologist in Washington, D.C., who can administer an intravenous immunoglobulin, or IViG, treatment, which has proven to work.

The roadblock is the treatment cost -- a minimum of $4,000 per infusion.

Jessica said Ava has an appointment with her pediatrician soon, and is still referring information to Maine Medical Center to see if it is willing to administer the treatment. As the side-effects are unknown, it would be preferable for the treatment to take place closer to home, she said.

"We're praying they'll take her on," the mother said.

For now, Jessica said, the plan is to educate as many people she can about the devastating disease, and get Ava on a consistent and helpful treatment plan involving a neurologist.

"It's not just about my family," she said. "It's about spreading awareness."

A GoFundMe page -- "Ava's PANDAS Treatment" -- has been set up to help Ava and her family with the expected cost of treatment and travel expenses.

Courier Publications reporter Beth A. Birmingham can be reached at 594-4401 ext. 125 or via email at bbirmingham@villagesoup.com.

Community Rallies for Ava
(Video by: Beth Birmingham/Amber Abbotoni)
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