Denver woman battling ‘one-in-a-million’ disease

DENVER — Naomi Binkley has made a living telling other people’s stories.

“I actually worked at FOX31 way back in the day,” she said, smiling.

But on Sunday, she sat on the other side of the camera.

“This has been the hardest story to share,” she told FOX31.

Binkley was diagnosed with a rare disease called Stiff Person Syndrome back in 2016, which has no known cure.

The odds of having the disease are one in a million.

“The main symptom for me is pain—and it’s severe pain.  I never imagined I would live in horrible, chronic pain every single day.  It’s largely in my upper arms—my triceps—and my upper legs,” she said.

Binkley recently decided to share her painful journey, after discovering there were little resources online, to try to raise awareness about the disease.

“There are simple things that I think people can do to not judge people who look able, but may be really struggling inside and their illness is maybe more hidden—and that’s been a big driving force for me.”

Some of the everyday struggles include frequent muscle spasms and the inability to make it up a flight of stairs.

“I get breathless and I cough quite a bit as well,” she said, even having to take a break during the interview to cough and drink water.

“It’s devastating,” said Naomi’s husband, Tom McDonald, with tears in his eyes.  “I know Naomi—the hiker, the person that’s really active.  To watch her go through that—it’s brutal.”

“I’ve missed middle school continuations.  I can’t go to the museum with my kids because I can’t do that walk.  And I just would really like for them to see me be the mom I could be,” Binkley told FOX31.

Thanks to a GoFundMe account, she hopes that day is possible.

Binkley will spend a week at the Mayo Clinic at the end of July for autoimmune neurological testing.

“I am excited at terrified, but at least it’s hope," she said. "Whenever I come to the end of one treatment and it’s not successful, you get depressed.  And I feel like this just feels like so much hope.”

And, it’s hope for more than just her family.

“I can use what has been given to me—whether this illness is cured or not cured, or managed or not managed—to share my journey and make a difference for someone else,” she said.

For a link to her GoFundMe account, click here.

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