Last month, Jordyn Walker, aged 15, was editor and photographer of her high school newspaper, seasonal manager of the school's baseball team and a competitive archer. Athletic, outgoing and multi-talented, the Missouri teens had everything for her.
But her life changed on December 12 when she was taken to a Kansas City hospital for severe abdominal pain and uncontrolled bleeding.
Before the night is over, the teenager has lost his vision and almost her life in a mysterious disease – one that made her bleed from her mouth, nose and ears. Worse, the illness could be repeated at any time.
"All doctors say it's unprecedented – they have never seen it," her father, Keith Walker, told HuffPost through tears. "So the path right now is very uncertain."
After losing her vision, Jordyn Walker had to renew everything she had previously relied on her vision.
"I went to see my whole life and suddenly I had to adapt quickly to being in constant darkness," HuffPost said. "I have to find my way [without sight] and to renew to do things like food and clothing.
Her father suspects that whatever happened to her is somehow related to the problems of the intestine and stomach his daughter has treated for most of her life. Over the years, she has seen a number of specialists, but the cause has never been identified. Symptoms, he said, would typically diminish after a strong antibiotic round.
The first sign that something more serious could happen to her during a cruise that the family took in July 2017. During the trip, they got sick. His teeth made him sick, the stomach had pains and he had bloody chairs. It has lost its taste and smell.
When they returned to the shore, doctors took a series of tests and came to treat it for a sinus infection. There have been several medical tests in Missouri, but no answers have yet been found. Eventually he regained his lost senses.
Jordyn Walker has returned to enjoy life. Everything was fine until the first week of December.
"His mucus glands have become so inflamed that he started bleeding his eyes, ears and nose," said Keith Walker. "She was ugly in an emergency room and was on a table listening to people talking about how she blew up."
The doctors stabilized her with blood platelets, her father said. After more than a week in an intensive care unit, she was released.
Jordyn Walker was hospitalized again on December 12 – once the family always remembers.
"Her nose was running away, her teeth were painful, her face washed and her eyes began to swell," said Keith Walker. "My ex-wife pleaded with nurses to treat Jordyn with [a steroid], but they hesitated to listen to a hysterical mother and gave Jordyn an epinephrine injection.
Within two hours, the teen's face became so swollen that her eyes nodded, forcing doctors to cut her eyelids in an effort to relieve pressure, according to her father. Then he underwent surgery to remove the orbital bones to allow the skull to flex and drain.
The photos below indicate Jordyn Walker at various points of disease progression and in the hospital, and these may be disturbing to some readers.
Even if the surgery saved his life, he failed to save his vision. When he woke up, he was in full darkness.
"The surgeon, optometrist and pediatrician said the optic nerve was destroyed beyond the medical science's ability to repair it," said Keith Walker.
Five days before Christmas, Jordyn Walker performed a facial reconstructive surgery to replace the orbital bones around his eyes.
Dr. Travis Langner, head of the Pediatric Critical Care Division at the University of Kansas Medical Center, is familiar with her case and said she appears to be suffering from some kind of autoimmune disease.
"This presentation is certainly unique," Langner told KMBC-TV in Kansas City this week.
Keith Walker told HuffPost that the doctors explained that he had an "incredible fight" inside the body.
"Usually this battle takes place between good cells and bad cells, but they think good cells fight against good cells because they can not tell the difference," he said. "They have no idea why."
The case caught the attention of the local press, but not all were correct, said Shannon Loerzel, her stepfather.
"Some of the media are [reporting] has returned from the cruise and was strangely ill, "Loerzel HuffPost said." There were extensive tests and we do not believe – and none of the doctors thinks – that the cruise had anything to do with the symptoms it has.
According to Keith Walker, doctors in Kansas City have recently referred to their daughter at the Mayo Clinic in Minnesota. She is admitted there on January 16 for another round of invasive testing.
Despite all that passes, Jordyn Walker said he does not want mercy or worry. She said she has a strong family support system and keeps an open mind about the prognosis for blindness.
"Science is always developing and new things come all the time," she said. – So you never know. Anyway, I'm not going to sit around and figure it out. "
The teenager, who seems to take everything in the walk, said he has some tips he wants to share with everyone who has read his story.
"I appreciate what's around you," she said. "No one really takes it seriously until it's gone. Recognize what you have and be grateful for it."
Family members have created a GoFundMe page to help cover rising costs. They also created a Facebook page to share information about her condition.
"My daughter is a fighter," said Keith Walker. "She's the hottest human being I've ever met on this planet. There's still a purpose for her and she'll find it.
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