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Family seeks help covering medical costs for 5-year-old with little-known disorder

"It's very hard to watch, you know, it's the worst thing that a parent can see, is just your child absolutely falling apart,” Megan Daniels explained.

LAKE OSWEGO, Ore. — For nine months, a Lake Oswego family has been trying to get their insurance company to cover a procedure their 5-year-old daughter desperately needs. It has not been an easy process and in the meantime, they have turned to the community for help.

“She's so joyful and happy and caring,” said Megan Daniels, whose daughter Berkeley was recently diagnosed with a little-known neurological disorder.

In just a few months, 5-year-old Berkeley went from being a happy normal child to having trouble walking and speaking.

"It's very hard to watch, you know, it's the worst thing that a parent can see, is just your child absolutely falling apart,” Daniels explained. “It feels like we're losing her."

Credit: Daniels Family

Losing her, to a little-known neurological disorder called Dystonia 28. Dystonia causes excessive, involuntary muscle contractions that can be painful. For Berkeley, her mom says her case is severe and rapid. In less than a year, her mom says she will require a feeding tube, wheelchair, a device to speak and a full-time aide to help her.

There is currently no medication to treat Dystonia specifically, but there is a surgical procedure called “Deep Brain Stimulation” that can help.

“The sooner the surgery is done, the better the prognosis,” Daniels said. “I mean, potentially, in the best scenario, she could get back to baseline and be where she was in the Fall.”

The surgery though is not approved by the Federal Drug Administration until the age of seven. So, since Berkeley is only five, Regence Blue Cross Blue Shield of Oregon initially denied coverage. Late Wednesday though, the family learned the neurosurgeon who plans to perform the surgery in July, can apply for an exception through the FDA that would allow Regence to cover it.

Regence Blue Cross Blue Shield of Oregon released a statement.

"Nothing is more important to us than the health of our members. 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."

In the meantime, the family has also started a GoFundMe.

Even if the surgery ends up being covered, they will still need help with medical bills.

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