Family trying to treat daughter with life-altering diagnosis not covered by insurance

- They look like normal kids enjoying their toys, but their parents said the medical treatment they're undergoing is costing tens of thousands of dollars.

To make matters worse, many of these families are stuck paying for treatments out of pocket.

A game of apples-to-apples in your own living room definitely beats driving six hours to D.C. and then spending two days in a hospital.

"We found a local doctor who has been very helpful to us and wrote the orders for us to get it in Charlotte," Traci Andrews said, Josie's mother. 

Josie is undergoing her third IVIG treatment - an infusion of donor antibodies. It's the only thing that keeps Josie's symptoms at bay.

"See what's she's like before the treatment and what she's like after. If you're human I don't know how you could say she doesn't need it," Andrews said. 

Andrews said her health insurance doesn't cover the $10,000 treatment.

She said Josie was diagnosed with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections - also known as PANDAS.

It begins with strep throat.

"This is a real disease and it took my daughter overnight," Monique Prato said. 

Prato's daughter Marley also has PANDAS - and gets the same IVIG treatment every four weeks.

"What happened was strep pretty much went into her bloodstream, went past the blood-brain barrier which it's not supposed to do and started attacking her brain - the basil ganglia - and causes her body to have an autoimmune response," Prato explained. 

She said Marley's infusion is covered by insurance. But Andrews said her daughter's is not.

"Because I'm a state employee, we're at the mercy of the state. They make the decisions about what's covered and not. Right now, they're not on board for covering an experimental treatment."

She's part of the Carolina PANDAS parents support group, which is working to get state legislation passed to cover the disease.

"Writing your legislators and I hope legislators will start listening. I would invite anyone to come into my home and see what the disease is like if you have any questions. See the difference between Josie before the treatment and after. There's no denying that she needs this," Andrews said. 

Until then...

"This is going to mean college savings is going to be gone. We're going to have to dip into retirement."

An option - many families don't have.

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