More from the series
Laughing in the dark
Jordyn Walker almost died in 2017 from a mysterious illness. In December it struck again, changing everything.
Part one: Bleeding from her eyes, Missouri teen’s illness mystifies doctors and captivates world
Part two: ‘I’m f***ing blind?!’ Missouri teen learns her fate, but a mystery lingers
Part three: ‘I want it to be over.’ Despair descends on Missouri girl mysteriously struck blind
Part four: Laughing in the dark, blind Missouri teen finds her way — and life-saving answers
(Part one of four)
The glass doors to the emergency room slide open with a tremble.
Jordyn Walker, 15, sick to her stomach, hurries in with her mother and big sister.
For years, the Smithville teen has realized she possesses a dark and irreverent humor. The more serious the topic, the bigger the joke. “I mean, as long as you can always find something to laugh at, there is nothing to be sad about,” she’d say.
But on the afternoon of Dec. 12, behind the curtains in the University of Kansas Hospital ER, there is nothing funny in the way Jordyn’s life is suddenly and forever about to change, or how, unbeknownst to her and everyone in her family, her character, her determination, humor and the way she will find her path in the world will soon be tested.
Nor does Jordyn have any inkling that, not long after this night, the story of her illness that virtually no doctor has ever seen will make headlines around the world.
BEHIND OUR REPORTING
Why a story on Jordyn Walker?
The early news of Jordyn’s mystery illness went viral in January. Yet as quickly as the news flashed, it died out as the international media moved on. An editor at The Star knew Jordyn’s family and messaged her father to say a reporter was interested in talking to them post-headlines. Early interviews quickly revealed that many of the viral stories had been wrong or misleading. As is typically the case, the story was far more complicated. Read more by clicking the arrow in the upper right.
How much time did the The Star spend reporting on the Walkers?
Reporter Eric Adler and photographer Tammy Ljungblad spent five months, off and on, with the family. Jordyn left the University of Kansas Hospital in late December. Adler interviewed her father, Keith Walker, in-depth in January, which by February led to multiple lengthy interviews with Jordyn and her mother, Kendyll Walker. The Smithville school district did not allow The Star access to Jordyn in her high school classes or activities. But The Star followed Jordyn through her classes at the Kansas State School for the Blind and at home through early June, working around the periods when Jordyn was hospitalized or visiting experts out of town.
At about 5 p.m., dressed in an oversized T-shirt, her light brown hair twisted into a bun, she stares pleadingly at her mother and sister Samantha. Marathon vomiting brought her into the ER, diarrhea, cramps that doubled her over, blood in her toilet.
Exhausted, she told her mom she needed to go to the hospital. “I just want my stomach to stop hurting,” she said.
Over the next few hours Jordyn watches from her ER bed as her hands turn pink and then red. Her fingers swell. Deep worry casts a shadow across her pale green eyes.
“Mom,” she says. Her voice vibrates with fear. “It’s the same thing. It’s happening again.”
Kendyll Walker doesn’t want it to be so.
“No, no,” she says, trying to keep her daughter calm. In reality, the mother’s stomach clenches. The idea of what may soon happen makes her feel like vomiting ,too. “Don’t get anxious,” she says.
But images from 17 months ago, in July 2017, flood her mind. Jordyn was 14, vacationing at her aunt’s house in North Carolina after a cruise. Doctors didn’t know exactly what caused her explosive, life-threatening swelling then. She would leave that hospital with no solid diagnosis other than perhaps it was some bizarre allergic reaction. They called it a one in a million occurrence, unlikely to ever happen again.
“Mom,” Jordyn says at her ER bed. “My teeth are hurting.”
That sign is enough for Kendyll Walker. At 48, she is petite, blond, a former high school cheerleader who now describes herself as a “neurotic mom.” Hours have passed in the ER.
Jordyn’s face has begun to inflate — her cheeks, her nose, lips, the flesh around her right eye. With growing dread, Kendyll tries to warn the ER staff of her daughter’s worsening condition. She phones her ex-husband, Jordyn’s dad.
“They’re not listening to me,” she tells Keith Walker. He immediately texts her a stream of photographs from 2017. Kendyll grabs a doctor.
“Look,” she says, scrolling through the images. “This is what happened in the past, and this is what’s happening now. And it’s going to happen. And it’s happening very, very quickly.”
The photos tell all: Jordyn, her face ballooning. Jordyn, her right eye swollen to slits. Jordyn, looking as if she’s been battered — blood streaming from her tightly squeezed eyes, nose and mouth. Jordyn struggling to live.
The ER’s corticosteroids and antihistamines won’t be enough, the mom knows.
“You need to look at this kid,” she demands. “She needs to go to the ICU.”
A rash spreads across Jordyn’s face. Her nose and forehead are turning a mottled purple. Her right eye, pushing against the lid, bulges from its socket.
Jordyn is rolled into intensive care, falling in and out of consciousness.
“What’s going on?” she murmurs.
“A pillar for stability”
At their home in Smithville, Kendyll has hung a photograph at the top of the landing. It’s a studio portrait of her three girls when they were years younger. Their mom thinks it perfectly captures their personalities.
Sidney, 22 now, a recent graduate from Pittsburg State University, is seated on the left, holding her fingers to her ear like a telephone. She’s the social one. “My party girl,” Kendyll calls her.
On the right, Samantha, now 21, soon to graduate from the University of Central Missouri, sticks her tongue out, fingers bent into rock ’n’ roll horns. “The rock star,” her mom says.
At center sits Jordyn, tiny and thin, plugging her ears with her fingers to block her sisters’ noise. She is neither smiling nor frowning, but gazing straight into the camera, going eye-to-eye with the world as if daring it to stare back. She’s the littlest, the youngest, the most vulnerable, paler than her sisters even in the photo, her mother notes. But her stare suggests she won’t blink first.
Jordyn is the strong one.
Or so she’s long tried to present herself: hip, “edgy teen,” the funny and wisecracking manager of the Smithville High School boys’ baseball team, an avid archer and softball player, the yearbook photo editor dressed in flannel and boots, or oversized T-shirts, Converse and leggings, belying new teenage sensitivities.
“For a long time I didn’t even have a mirror in my room,” Jordyn would share, “because I thought I was ugly and I was fat. I didn’t even take selfies. I hated them. That’s why I became a photographer; it was because I was always behind the camera and I didn’t have to take pictures of myself. I didn’t have to put myself in the yearbook, because I was making it. If I could control what other people saw, then that’s what I did.”
What her friends who admired her saw was the girl who was brave enough, self-aware enough, to come out as gay in eighth grade, soon after moving from Olathe to Smithville at an age when some classmates struggle over what shoes to wear.
“I figured, you know, people are going to find out one way or another,” she said, “so I might as well make it something to remember about me.”
As a freshman, she joined her high school’s Gay Straight Alliance.
“It was a scary new thing that nobody in my family really understood,” she said, “so why not surround myself with other people who are scared and confused and we can help each other out?
“Now there’s a whole band of confident lesbians/bisexual/gay kids at Smithville, and they’re all so powerful, and are all so outspoken.”
Jordyn is the one who, for a circus-themed dance, arrived decked out as a ringmaster with a top hat, gold bow tie, red corsage, white gloves and tight black shorts. She doesn’t shy from the spotlight, cultivating her sense of sass.
She cracks up at “South Park,” profanity-laced YouTube videos like “You’re a Wizard Harry” — “The garbage that makes no sense to the average human being,” she’d say, that’s the stuff that makes her laugh.
“It’s hard to describe,” said her friend McKenna Hill, 18. “She just has a way of making herself present in every room.” McKenna, the editor of the school newspaper, was a junior when she met Jordyn, who was then a freshman. Despite the age difference, they became best friends.
“Before anything else,” Hill explained, “she knows who she is. She has really strong convictions. She doesn’t get peer pressured into being somebody she’s not. Among her friend group, Jay has always been the strong friend. She’s like a pillar for stability.”
“We need to cut the eye”
Inside the intensive care unit, Jordyn is suffering. The ICU has called in an ophthalmology resident. The pressure has grown critical. The swelling inside her right eye, making it feel as if it will pop from its socket, spreads to her left eye.
“Sami, help me,” she calls to her sister. Samantha’s helplessness will haunt her.
As soon as the ophthalmologist enters the room, he knows Jordyn is in crisis. Measured in millimeters of mercury, normal intraocular eye pressure is 12 to 22. Jordyn’s is erupting near 86.
“He said, ‘OK, we need to cut the eye,’” Kendyll recalled, “to get some of the pressure out of the eye.”
The procedure is known as an emergency lateral canthotomy and cantholysis. The young doctor was sweating, she said.
“I told him he needed to calm down,” she said. “I said, ‘You’ve got this.’”
Surgical scissors in hand, the doctor cuts.
“So what’s going on?”
From the time Jordyn was 2, she faced one strange illness after another.
First: a rash that spread across the 2-year-old’s legs.
Jordyn had been standing near the kitchen stools when Kendyll saw the welts. She thought they might be bug bites. “Then more appeared and more appeared,” she said. “They started to get larger. Then up one leg, then the other leg.”
She sped to Children’s Mercy Hospital. By the time she hit the ER, Jordyn’s ankles were swollen black and blue.
Doctors thought they knew exactly what it was: Henoch-Schonlein purpura.
The disease’s precise cause is unknown, although it is thought to be an auto-immune disorder in which something — perhaps an infection — triggers the body’s immune system to attack its own tissues. Small blood vessels in the skin, joints, intestines and kidneys inflame. They ooze like swollen rivers overflowing their banks.
Bruise-like leopard spots cover the legs, feet and buttocks. Blood leaks into the digestive system. Kids cramp, they vomit, stools become bloody diarrhea.
In severe cases, it can cause kidney damage, although most often the purpura goes away on its own, as it seemed to do with Jordyn. But from that moment onward, Kendyll said, “there was not a month that went by that I did not call the nurse about something.”
At ages 2, 3 and 4, Jordyn was plagued by bloody diarrhea so severe she was hospitalized three times for what doctors also thought might be ulcerative colitis, without any known cause, no less a cure. Mysteriously, the bouts often seemed to hit in February. It got to the point that every time February rolled around, the family’s nerves peaked.
They checked for allergies: besides an odd assortment, like lobster, bananas, peppermint, there was nothing else, not even ragweed.
“So what’s going on?” Kendyll thought. “Why is she having all these things?”
At age 7, Jordyn was suddenly limping. Back to the doctor.
Around that time, Kendyll and Keith Walker would divorce in bitterness after 17 years together. Jordyn’s relationship with her dad remained fraught with tension and conflict. Keith, who works in environmental sciences, thought the limp might be from a softball injury. He was a coach. Doctors X-rayed and said it was a sprain.
Unconvinced, Kendyll insisted the other leg be X-rayed.
“They said, ‘There’s no need. There’s nothing wrong with her other leg,’” she recalled. “I said, ‘Yeah, well, I don’t care. I’m neurotic. I just want to see the difference.’ You know when something is wrong.”
There was: osteomyelitis, a dangerous bone infection. She was rushed to surgery that night to open the bone and remove copious volumes of pus.
“But something else weird happened there,” Kendyll said. “When she was coming out of surgery, she was wet with sweat. She was pale. I said, ‘What’s happening?’ She said, ‘I felt everything. I wasn’t asleep for it.’”
Jordyn told her mom that she remembered it all: The movements of the nurses and doctors. Their masked faces. “She said she tried to say something, but couldn’t and it hurt.”
Kendyll was horrified.
“You see those movies where somebody goes into surgery, but they can feel everything and see everything, but can’t move, can’t speak. That is what I was picturing for this poor 7-year-old.”
She never accepted the doctors’ explanation that it was likely a post-operative hallucination.
Thankfully, over the next four years, everything seemed to calm. From age 10 through 13, virtually nothing major happened — and then it did, and almost killed her.
“A one in a million case”
Jordyn was 14 and reluctant to go on a cruise with relatives that late June of 2017. She was upset before she even left the airport in Kansas City.
“I have such a bad feeling,” she wept to her mom. “I don’t know what it is, but it’s terrible.”
But how could it be? The weeklong cruise was to St. Thomas, St. Martin and the Bahamas with her dad and his sister — her Aunt Gemma — and Gemma’s family. Her sisters Sidney and Samantha would be there, too.
The plan was for Jordyn to stay on a few weeks into July in North Carolina with her aunt and cousins while her sisters and dad flew home.
About a week after the cruise, Jordyn’s family gone, the bloody diarrhea returned. She tried to brave it out, gripping her stomach in pain. Her aunt took her to urgent care. They gave her an antibiotic and medicine for irritable bowel syndrome and nausea and discharged her.
Still in pain the next day, she went to a nearby emergency room, where doctors injected her with a contrast dye for a CT scan.
Jordyn’s face had begun to swell. Her nose was bleeding slightly. Her cheeks hurt. Oddest of all, so did her teeth.
Doctors determined it was a colitis attack and sinus infection and, once again, sent her home.
Four hours later, Kendyll in Smithville spotted a selfie Jordyn posted on social media. Her face was swollen. She’d shoved cylinders of tissue up her nose; it was draining more blood now.
“Gemma,” Kendyll said, calling her ex-sister-in-law, “you need to get her back to the emergency room. This is not a sinus infection.”
It was after 11 p.m. “Oh, my God,” Gemma Amiott recalled thinking, “something’s happening here.”
Jordyn’s nose seemed to have doubled in size. Her eyes were swelling shut.
“Then she started bleeding from her nose, mouth, eyes. Her blood was not clotting,” said Kendyll, who hopped on a plane and flew to North Carolina.
Amiott rushed her niece back to the ER, which sped her by ambulance to a more advanced ER in Wilmington. By the time she arrived, Amiott said, her face was so blotched, “it looked like she had been beaten.”
“I look like a Kardashian after surgery,” Jordyn joked, as she was rolled into the ER.
Doctors swarmed her bedside.
“They were trying to save her life,” Keith Walker said. “She was swelling so badly.” Doctors feared her throat would close and she might choke to death, he said.
Wrenching in pain, Jordyn began bleeding from every orifice but her ears.
“When I saw her in the hospital, you’re seeing your kid, both arms are out like on a crucifix,” Kendyll said. “They had IVs everywhere, and there were several teams all over the place.”
The swelling became so bad, the tiny capillaries feeding her lips, nose and parts of her tongue were robbed of oxygen, turning them ink black with necrosis.
She spent 14 days healing in the hospital, with no diagnosis other than what doctors thought might be an allergic reaction to the CT scan dye.
For more than 16 months, she lost her sense of smell and taste.
“They said it was a one in a million case,” Jordyn’s dad said. “Nobody had seen anything like it.”
They were wrong.
Too little, too late?
Her face numbed inside the pediatric ICU at KU Hospital, Jordyn hears the ophthalmologist snipping the tendons in her eyes. “Like pliers snapping metal tubing,” she’d remember. The cuts relieve pressure, but then it rises again.
Jordyn is prepped for the operating room for an orbital decompression. Surgeons go deeper beneath the eye. They saw away and temporarily remove the outer wall of the orbital bones that cup each eye, giving the eyeballs room to expand.
The question is whether even this is too little, too late, or whether Jordyn’s optic nerves, suffocated of oxygen, are already dead, leaving Jordyn blind.
Doctors examine her over the next couple of days. They remove the breathing tube from her throat. Her eyes are bloodshot. Her black pupils are so large they eclipse her green irises.
“I can’t see anything,” Jordyn says. “Are my eyes dilated? What’s going on? …
“So, when is this coming back?”