26-Year-Old Tearfully Documents Going Blind After Her Corneas ‘Died Off’: ‘I Feel Powerless’ (Exclusive)

NEED TO KNOW

• McEwen Baker has undergone 24 eye surgeries and is now going blind

• The 26-year-old opened up to PEOPLE about her experience and coming to terms with her progressive vision loss

• After sharing her journey on social media, she is now establishing an online community

A TikToker is opening up about her experience going blind at age 26, hoping to be transparent about the difficulties she faces and find a sense of community as she adjusts to her progressive vision loss.

McEwen Baker, a Chicago-based actress and bridal stylist, was just 2 years old when she started to experience pain and redness in her eyes. The symptoms were initially dismissed by her doctor as seasonal allergies, but when her eyes worsened, her mother pushed for a consultation with an eye specialist. Thankfully, she was able to connect with experts at Johns Hopkins Wilmer Eye Institute and travel from her hometown of Versailles, Kentucky, for a second opinion.

“My mom said, ‘I just really feel in my gut that something is wrong,’ ” Baker tells PEOPLE. Baker was diagnosed with uveitis, a form of eye inflammation that can lead to serious complications like glaucoma, which she developed at age 6.

From that point, Baker, now 26, spent her childhood undergoing numerous optical treatments. But when she was 15, a “horrible” accident to her right eye significantly set back her journey.

“A lot of the surgeries that I had previously were disrupted by this one event,” she recalls, explaining that the traumatic incident caused her cornea cells to “die off.”

As a result, Baker underwent partial cornea transplants for her right eye in 2017 and 2020, both of which only held up for a few years. And by 2022, doctors told her that they weren’t comfortable performing another.

“They basically said, ‘Your vision is going to continue to get worse and it’s just not worth the risk to do another cornea transplant on your right eye.’ At the time, that was so devastating and hard to understand.”

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Baker was declared legally blind in her right eye in 2022 and could only see light and shadows. Although it was difficult, she says she was able to come to terms with the decline of her vision. She continued her medications, wore glasses and relied on her left eye to read and drive.

But she knew it was not getting better. “I started to realize, okay, this is not ending — and I’m feeling myself experiencing medical trauma around things that I can’t control.”

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While navigating that harsh reality, everything changed for Baker in March 2023, when she woke up to what she calls one of the scariest days of her life.

“I woke up on St. Patrick’s Day and couldn’t see the light on my ceiling,” she recalls. “I was like, what happened to the light? And then I realized I couldn’t see anything around me. It was kind of like a white haze, almost like you’re waking up in a really foggy place.”

She later learned that the cornea in her left eye was starting to die off just as her right eye had done. “That was one of the hardest things I’ve ever had to hear because I knew what that meant and I knew that there wasn’t really a solution,” she says.

Baker was told that what she experienced the morning of St. Patrick’s Day was a condition called corneal edema — something she’d have to manage consistently moving forward.

“Essentially what happens is when those cells are dying and swelling, it creates this haze across your vision that doesn’t allow light to refract, and then it warms up over time,” she explains. “So that’s how it started out. I would wake up and have 30 minutes of blindness, and then it would warm up and be totally fine for the rest of the day.”

“But the general consensus was that it would continue to deteriorate and that swelling period would last longer and longer,” she continues. “And eventually those 30 minutes turned into an hour, and then two hours, and now I’ve gone almost a week with no vision.”

She admits she hasn’t yet learned how to do things without vision. “So when I do have full days or full weeks of vision loss, I am kind of at a loss.”

Baker’s longest span without vision was in August 2025, and the loss was starting to take a greater toll on her mentally. “The progression of my disease seems to just be a little bit more rapid than we thought it would be. I never imagined that I wouldn’t be seeing for full days at a time,” she says.

She’s been talking to a therapist regularly to help with her mental health as she navigates this “huge life transition.” And as a new resident of Chicago, she was encouraged to find support groups to help adjust to her new reality.

Struggling to do so, Baker decided to post an extremely vulnerable video on TikTok sharing her journey.

“I am actively going blind at the ripe age of 26…and it’s happening more quickly than I ever anticipated and it’s now starting to infringe on my life in a really real way,” she said in the Aug. 19 post, tearfully asking her followers for resources and a community to help her transition.

“I really need to talk to people who are also experiencing this because I’m feeling like this a lot,” she added. “I have a lot of dreams and ambitions that I feel powerless to obtain in this current life shift and that really really sucks.”

In another video, Baker tearfully documented “what a bad day looks like” with progressive vision loss. She said she couldn’t see herself in the mirror, couldn’t read text messages and couldn’t even see her couch across the room in her apartment. She then showed herself trying to lift her own spirits by getting dressed and forcing herself to go outside independently.

Baker tells PEOPLE that her vision is different every single day but she’s not completely blind yet. She says she’s in awe of how many people she’s been able to connect with online in the past two months and she’s grateful for the additional support she has moving forward.

“I was so overwhelmed in the best way,” she says, starting to cry. “I’m still emotional about it, but it just feels like I found the good side of the internet. It has just been one of the most uplifting experiences and has instilled some hope in me that I didn’t think I would access again.”

“Grief isn’t linear,” she adds. “I definitely still have days where I am angry or really sad or bargaining with the idea that this is the trajectory of my life. But overall, I think I am moving towards a place of acceptance.”

Read the original article on People