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‘Devastating:’ Mother says insurance company denied brain surgery for 5-year-old’s genetic disorder

Berkeley Daniels

Berkeley Daniels

LAKE OSWEGO, Ore. — An Oregon mother said a health insurance company denied brain surgery her 5-year-old daughter desperately needs to relieve symptoms of an extremely rare genetic disorder.

Megan Daniels said her daughter, Berkeley, suffers from Dystonia 28, a childhood onset form of the movement and muscle-impairing disease. According to Daniels, there are fewer than 100 reported cases of the disorder worldwide.

Daniels said Berkeley was scheduled for surgery in July to insert a device to help control and alleviate involuntary muscle contractions that leave her unable to speak well, eat by herself or walk more than a few steps at a time. The treatment is called deep brain stimulation.

According to Daniels, the family’s insurance company, Regence BlueCross BlueShield of Oregon, denied covering the surgery because the FDA doesn’t approve of the treatment in patients under the age of 7.

“We’ve been met with obstacles and roadblocks the entire way,” Daniels said. “We have been met with people who are not paying attention, not communicating well.”

A spokesman for the insurance company didn’t answer specific questions about the claim, but said if the FDA grants a special waiver in Berkeley’s case, then Regence BlueCross BlueShield will approve the treatment for coverage and payments.

“Nothing is more important to us than the health of our members,” said spokesman Jared Ishkanian in an emailed statement. “We are working closely with Berkeley’s doctors to ensure all FDA waivers and requirements are in place, so she can seek treatment in a safe and timely manner.”

Daniels said having the surgery as soon as possible is critical for her daughter. The disease is degenerative, and Daniels said her daughter is deteriorating rapidly.

“It’s a terrible diagnosis – rapid progression and the dystonia will take over her body,” Daniels said. “She won’t be able to eat, talk, walk or use her hands, and so it’s taking away all of her functions.”

Daniels said Berkeley was born with a genetic difference, but medical experts weren’t sure what it was until this last fall, when Berkeley started exhibiting unusual symptoms, like walking pigeon-toed and then on her toe.

The family went to many specialists before reaching a diagnosis that was later genetically confirmed.

“It’s very depressing and devastating,” Daniels said of the disease.

Still, Daniels said her daughter remains a happy child with a mischievous streak and an empathetic heart. Berkeley also gets frustrated by her limitations, but pushes through weekly physical therapy and speech therapy.

“She works really hard to hold onto what she has, but the disease is just progressing too fast,” Daniels said. “She’s meant to fight this. I think she can do it.”

The family is raising money through a GoFundMe account. 

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