'Have faith' – Bridgeport woman battling rare disease reflects on 8-year struggle

Since 2016, Cheyenne Blake, 25, has suffered from a rare disorder that has a numerical classification but does not yet have a name.

Frank Recchia and Rose Shannon

Jul 8, 2023, 5:12 PM

Updated 317 days ago

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During National Disability Pride Month, a Bridgeport woman who is battling a rare autoimmune disease spoke publicly for the first time about her eight-year battle.
Cheyenne Blake was on track to become a medical doctor, having graduated near the top of her class at Fairchild Wheeler High School in 2016.
"In middle school and high school, I was on the honor roll, so that was my thing," the 25-year-old says.
Then she went to Fairfield University on a full academic scholarship until the unthinkable happened during her freshman year.
"I was in college, but then I got sick and I had to come out of college," Blake says.
Blake developed an extremely rare auto-immune disease that still has no official name. She’s now confined to a wheelchair.
"This just happened out of nowhere. I was perfectly healthy before. Nothing was wrong with me," Blake says.
Her family says they went to all the big local hospitals, even the Mayo Clinic in Minnesota, where Blake was initially misdiagnosed as having NMDA antibodies encephalitis. They say years later, through rigorous therapy, Blake is now able to move around better but is still extremely limited in what she can do.
Blake says she gets her strength from God. The family says it is a privilege to hear Blake say how she also draws her strength from those who love her most.
"I would say it's from them and my family because they're always around for me, no matter what," she says.
"Cheyenne is my inspiration because she gives me strength. She's willing, she's not folding under pressure at all," her mother Stacy Johnson says.
"You look at her and she's such an inspiration. She has such tremendous strength that she inspires you to go forward," says he aunt Sharnet Jumpp.
Blake received a special visit Saturday from Sen. Richard Blumenthal.
She says she is proud her story is being told during Disability Pride Month as a young woman who just keeps on smiling in spite of all her challenges.
"I am very proud of myself because [of] all that I've been through, all that I overcame and all that I'm going to overcome," Blake says.
"I knew her prior to her having this challenge," says Rev. Dr. Herron K. Gaston, of the Summerfield United Methodist Church.
He says Blake’s family provides a perfect model of the meaning behind the month.
"Disability Pride Month is something that all of us should celebrate – the diversity of who we are, the spirit of who we are," Gaston says.
Blake says she still remembers being a child full of so many dreams, only to end up feeling those dreams were shattered.
"It was like, 'why me? Why did this have to happen to me?' So I was angry," she recalls. "I still keep my hope high because that's basically all I have right now, so I need to keep it up there," she adds.
The family says they hope somebody who sees the story can help them get Cheyenne into a neurological rehab facility.
If you can help, call Stacy Johnson at 203-913-4683.


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