SMITHVILLE, MO (KCTV) -- Jordyn Walker is a normal teenager from Smithville, Missouri and her family and doctors have no idea what caused terrible swelling and bruising.
Jordyn had emergency surgery, but doctors could not save her eyesight which resulted in her becoming blind.
Tuesday, the family drove to the Mayo Clinic hoping experts there might have some answers.
“All you can do is sit and breathe because whatever happened, happened, you can’t stop it." Jordyn said. "It’s just more of it, is how am I going to deal with it?"
Why Jordyn went blind, one month ago, is a medical mystery.
“She just said something is really wrong, we’ve got to go to the emergency room,” Kendyll, Jordyn's mother, said.
It started as severe GI issues then sudden and extreme facial swelling.
“So I had stomach pains and then I had bloody stools, then I started throwing up,” Jordyn explained.
Jordyn told KCTV5 that this has happened twice. The first time was a year and a half ago when Jordyn was rushed to an emergency room in North Carolina.
“And then all hell broke loose. Everyone panicking, nurses panicking." Jordyn said. "There was a guy, he was in charge of the oxygen mask. He just looked at me and his whole face paled."
“She started bleeding out of her nose, mouth, bottom and everywhere. Just started bleeding, the swelling was happening very rapidly,” Kendyll said.
Jordyn’s skin busted open causing permanent damage to the skin above her lip and blood vessels busted in her eye.
“Never got to the bottom of it. Nobody knows because she swells up so bad." Kendyll explained. "They medicate her with prednisone, which hides everything else so all the testing’s comeback fine."
Jordyn did recover and North Carolina doctors assumed what happened was a severe allergic reaction to something or a sinus infection. Jordyn’s parents now wonder if history may provide important clues in this medical mystery.
At age 2, Jordyn had HSP or Henock Schonelien Purpura, which is a form of vasculitis where tiny blood vessels become inflamed. That did eventually go away.
On top of that, Jordyn has always struggled with colitis.
“She has had stomach pain and bloody diarrhea,” Kendyll continued. “Every February we knew that was going to happen.”
This December, all of the symptoms struck again with devastating consequences.
“She said something not right is happening harder and stronger, somethings not right,” Kendyll said.
“I remember looking to my sister and my mom and saying 'it’s happening again' and I remember nothing after that,” Jordyn voiced.
Jordyn was rushed to KU Medical Center where her older sister was by her side, and her face is her last visual memory.
“By the time they got her to the ICU, her whole eye was swollen so terrible it was literally out of the socket,” Kendyll explained.
Jordyn then had emergency surgery.
“I don’t remember how it felt, remember how it sounds." Jordyn said. "Cutting my eyes open."
The next wave of memories are sounds and darkness
“Are my eyes overly just overly dilated what’s going on? Why can’t I see?” Jordyn questioned.
It was then that Jordyn realized she was blind.
“Had a bit of a meltdown and cried for a little bit, screamed and then that’s it. Okay, well what now?" Jordyn questioned. "Cause you are going to be blind in 20 minutes. I’m going to be blind in 20 years. So I can mope about it when I have so many better things to do."
Jordyn and her family are now searching for answers. They are packing up and heading to the Mayo Clinic.
“Our hope for the Mayo Clinic is that they find out what’s going on with her so this doesn’t happen again so we can help her,” Kendyll explained.
They are also turning to social media, laying out all of the information and pictures hoping experts or patients will read about Jordyn’s case and solve what’s going on. The outpouring of advice and support has been phenomenal.
“It makes you feel you aren’t walking through this alone." Kendyll voiced. "I pay attention to when carpet becomes wood."
Jordyn is adjusting to her new life. She counts, 1,2,3,4, and she uses her other senses to navigate.
“Drag my finger across this wall and I keep doors open and go from there,” Jordyn explained.
Her most important sense in this new dark world is her sense of humor.
“Haven’t fallen down the stairs yet, we’ll get there. It’ll happen,” Jordyn voiced.
Jordyn also possess an amazing sense of perspective and that has nothing to do with sight.
“Just breathe. Take a moment and sit and breathe, don't think about the bad things." Jordyn explained. "I guess because there is always a road, there is always something at the end of the tunnel that is the light."
Jordyn plans to head back to school and It’s not clear yet what that will look like. It’s the Mayo Clinic first and then the family is also considering the National Institute of Health.
KCTV5 will keep you posted on Jordyn’s journey.
If you are interested in learning more about what happened to Jordyn, you can access her GoFundMe account.