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For almost her entire life, Jordyn Walker, 15, has suffered from gastrointestinal issues. Sometimes the vomiting and diarrhea became so severe she needed to go to the hospital. Doctors told her she had colitis, a chronic disease of the colon, where the lining becomes inflamed and sores develop. While it was annoying, Jordyn coped, often with humor.
“I get all the weird unique problems, because why would they give the normal stuff to me?” she told TODAY.
In 2017, Jordyn was on vacation in North Carolina when she developed startling new symptoms: extreme swelling in her face with dark bruising around her nose and mouth, and blood clots in her nose. The staff at the emergency room was puzzled. They gave her medicine to tackle her gastrointestinal symptoms and swelling. They also ordered a CT scan, but the tests revealed nothing. Doctors simply thought it was an “allergic reaction.”
“They told us it was a one in a million thing and this is a phenomenon they can’t explain. This is going to be fine and is never going to happen again,” she explained.
So Jordyn returned home to Smithville, Missouri, with what she thought was a “cool story” about vacation. But that illness had a lingering impact. She could no longer taste or smell.
Life returned to normal as she visited an immunologist and rheumatologist for follow-up appointments. Still, doctors suspected the swelling was some sort of allergic reaction.
On December 12, Jordyn complained of a tooth ache and her nose started running uncontrollably. That was exactly what happened before her face swelled on vacation. Panicked, her parents rushed her to University of Kansas Medical Center emergency room, which is about an hour from their home.
Her mom, Kendyll Walker, tried explaining that she believed Jordyn’s face would swell again. But doctors proceeded cautiously.
“Kendyll presented them with a series of events that would happen,” Keith Walker, Jordyn’s dad, told TODAY. "They didn’t act until they actually saw the swelling."
This time, the swelling was so serious that her eyes looked as if they were popping out of her head and doctors worried.
Fighting for answers
An ophthalmologist removed her eyelids and tried opening the socket to reduce the pressure. A little bit later, she underwent an emergency surgery to remove some of her orbital bones to reduce the swelling. But it was too late. The swelling damaged her optic nerves and today she is permanently blind. Doctors don’t know when Jordyn might swell again and what it could damage.
“It’s frustrating, terrifying and everything,” her mom said.
Doctors remain unsure why Jordyn experiences such startling swelling. They believe the same thing causes her GI symptoms and the swelling — but what it is remains a mystery. First, they explored vasculitis, inflammation of the blood vessels that would cause stomach upset and facial swelling. But tests determined she doesn't have it.
"It is definitely a complicated case," Dr. Travis Langer, a pediatric critical care doctor at Kansas University Medical Center, told TODAY. "It is difficult for the family and it is difficult for us to not have an answer."
Langer said the family has steroids they can use if the swelling starts again to stop it from spreading as quickly. Doctors are waiting for more test results and asked the National Institutes of Health to help investigate.
"This is not a contagious disease," Langer explained. "This is likely something inherent to Jordyn."
The family is visiting the Mayo Clinic in Rochester, Minnesota, in mid-January to see if doctors there can help.
“At this point, I don’t think we are going to settle for anything less than an answer,” Jordyn said. “Even if it will take 20 years, I doubt our family will stop fighting for answers.”
Since returning home from the hospital December 28, Jordyn has been learning to navigate life without her sight. She visited her high school to learn about her new accommodations for when she returns.
“It was nice to feel normalish again and be back around people I know. It is going to be a long process,” she said.
While Jordyn remains optimistic, she's sad when she thinks about how life has changed. She used to enjoy photography and worked on the newspaper and yearbook. She had just started archery and was on the school team.
“I can still do it. It is just different. With archery I didn’t know how to aim before. Now, they can’t get angry at me if I miss,” she said with a laugh.
Grappling with her mystery illness has helped her be appreciative, and she remains positive because “life is too short to be negative.”
Her family set up a Go Fund Me to help with the medical costs, and because they’re interested in hearing from experts who might have an idea of what is happening. The family is touched by all the support they have received.
“The outpouring of support, it is very humbling and overwhelming that there is so much kindness,” her dad said.
As of January 2019, the National Institutes of Health agreed to review Jordyn's application. If accepted, she could join clinical research trials as part Undiagnosed Disease Network.