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Valley family desperate for answers after loved one develops 'mystery illness'

Posted at 3:24 PM, Dec 08, 2019
and last updated 2019-12-09 20:22:22-05

PHOENIX — Not long ago, Shawn-Lee Midkiff was a happy and healthy mother, grandmother and wife.

"Very outgoing, well spoken, sign language interpreter," Shawn-Lee's husband Guy said. "Loving wife, loving mother."

But today, she lies in a hospital bed. Her family says she developed a debilitating illness that remains a mystery to them and doctors.

"It started in about the beginning of October where she started getting a little imbalanced and sleepy," Guy said.

"It went from having trouble walking, to a cane, to a walker, to the walker didn't help anymore," Shawn-Lee's sister Kris Barnett said.

Not only does the family say Shawn-Lee can barely walk, but they say she has difficulty using her hands, swallowing food and is unable to speak.

"It's so stressful to see her like this and not to know what's wrong with her," Barnett said.

They say her illness appears to be neurological.

"Her brain is not functioning to where her body moves the way she wants it," Barnett said.

They say it has stumped doctors who are still running tests, as they wait for answers.

"We are losing every minute of the day that we are not knowing what's wrong with her because she is declining," Barnett said.

They're hoping someone sees her story and recognizes her symptoms. They say they are reaching out to medical specialists abroad, seeking input on her condition.

"If there are doctors out there who are interested in learning about her case and how quick it's declined that we can just find a diagnosis and fix her," Barnett said.

"I just want my wife back," Guy said. "I want them to figure out what's wrong so they can start treating her. They can't treat her if they don't know what's wrong with her."

ABC15 reached out to Honor Health, the hospital where doctors are treating her. A spokeswoman said they are unable to comment because of privacy laws.

Several people reached out to ABC15 and said they've either personally, or had loved-ones, with similar symptoms. They've also shared the names of rare diseases they believe may be to blame.

ASU Bio Engineering expert Bradley Greger says the difficulty with diagnosing neurological diseases is that common symptoms can have many underlying causes.

"That trouble with walking can be caused by many different things underneath it, but it looks the same to the physician," Dr. Greger said.

Dr. Andrea An says it's a common problem for the patients who walk through the door at Neurology Associates Neuroscience Center. She says despite running tests, many patients remain undiagnosed.

"At that point you're trying to manage symptoms," Dr. An said.

An and Greger agree more research of the brain is needed. Greger says basic scans, like an MRI, can only go so far.

"Often times these diseases, they're happening down at the cell level or the molecular level and you can't see enough resolution to understand what's going on there," Greger said.

Greger referenced the Netflix show "Diagnosis", where the power of crowd sourcing and social media helps find a solution for mysterious illnesses. He has this advice for families struggling to figure out what's wrong: "Reach out, get second opinions. Do social media and get opinions from people who've had similar experiences," Greger said. "It take a village."

To donate to the family's Go Fund Me page to help pay for medical expenses, click here.