ARLINGTON, Va. — When Arlington resident Misty Costner discovered she had a 105-degree fever Saturday, she rushed to the hospital, worried it could be COVID-19.

Her health has a ripple effect for her 12-year-old daughter Elizabeth, who has a rare genetic disorder that makes her non-verbal, deaf-blind, and importantly when it comes to illnesses, immuno-compromised.

"I was desperate to get a test for her safety," Costner said. "And also because she requires 24-hour assistance. I knew that my husband would need help in caring for her, and it was important for us to know what my status was for her safety, and also for us to simply survive."

She said hospital doctors ran multiple tests for other illnesses, but said she did not qualify for a COVID-19 test, namely because she hadn't traveled recently and was under the age of 60.

Costner family
Harry, Elizabeth, and Misty Costner (left to right) pose for a picture.
Misty Costner

Costner said they tried to explain to doctors that her daughter was vulnerable, but they told her she did not meet the testing requirements laid out by the Centers for Disease Control and Prevention.

Next, she and her husband reached out to private doctors and labs, trying to secure a test -- all to no avail.

"We felt abandoned by the system," Costner said. "Arlington is a wonderful, wonderful community to live in ... We've always gotten such amazing help with my daughter and her challenges. The system really felt like we were on our own somehow ... it just felt like we were very isolated and left to our own devices."

Finally, on  Wednesday, they got through to the Arlington drive-thru testing site and set-up an 11 o'clock appointment. Misty, who hadn't even had the strength to watch TV all week, drove herself to get tested.

"The testing process like today was actually quite easy, very surreal, but quite easy," she said.

They told her it could take up to five days for the results to come back.

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Elizabeth Costner
Elizabeth Costner waves to the camera.
Misty Costner

Throughout the process, Costner had quarantined herself in her and her husband's upstairs bedroom to avoid exposing Elizabeth. Her husband, Harry, has remained downstairs with their daughter, looking after her.

"I mean my daughter cannot feed herself," she said. "She cannot go to the toilet herself. She's legally blind, so she has to be held walking up and down the stairs," Harry Costner said. "It's a full-time job that usually takes about four different people when all of our support systems are in place, so right now I'm kind of I don't know sort of zombie caregiver, with sleep deprivation, delirium, operating from my adrenals."

He said he has been frustrated by the lack of assistance for the special needs community. 

"It feels like the Wild West, like if you've got it, hopefully you'll get over it. That's kind of the M-O that we're operating on," Harry said.

For now, they're finding strength in their community's support and the knowledge that soon they'll receive test results. 

While Harry is worried for his wife and daughter's safety, he finds small moments of joy hanging out with Elizabeth, who he describes as "beautiful, otherworldly, brilliant soul."

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