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 four of four)
Jordyn Walker steps into her kitchen to wash plates and empty the dishwasher. But first, music.
The Smithville 16-year-old, padding about in knee socks patterned with yellow giraffes, hasn’t smiled so much in months. She picks up her cellphone, scrolls through her “talking” apps and cues up a song with swagger.
Ariana Grande’s syncopated “7 Rings.”
Immediately, Jordyn — who in December was struck blind by a mysterious immune reaction that caused her eyes to bleed and bulge from their sockets — sings along, mouthing Grande’s updated “My Favorite Things.”
Been through some bad shit, I should be a sad bitch
Who woulda thought it’d turn me to a savage?
The only time Jordyn sees now is in her dreams. Her world there remains as fixed as a photograph. When she went blind, she bumped around the house, literally running into walls. Now, she knows the place better than her skin. It’s comfortable.
“There on a far right wall is the long black couch that has two striped pillows, two swirly pillows and a small rectangular pillow in the middle,” she would later say, identifying the placement of every item in the family room, down to the location of ashes of their dead dog, Jinx, in an urn on the mantel.
She moves about, grabs glasses and silverware, cups and plates. Sometimes, for a brief moment, she searches the empty air, passing her hand over the countertop to feel if anything is there. Otherwise, she puts everything away with little effort.
The rock band Queen cranks from the speaker.
Don’t stop me now, I’m having such a good time/ I’m having a ball …
Jordyn, for a brief moment, dances in the dark, halting in her steps, striking poses. Less than six months after having her life upended she is finding her way in the blackness, gaining control again.
“I mean, a lot of times,” she would say, sitting cross-legged on a couch with her mom nearby, “I don’t really even notice that I’m not seeing.”
The statement would have been unimaginable to her months prior, when she mourned her loss — never being able to view a sunset, a movie or her mother’s face again. Had a fortune-teller told her that she would go permanently blind at age 15, “I think I would have been wallowing in it,” she says. “I think I would have been set and ready and prepared for a life of just darkness and just being sad all the time.”
But she realized that until tragedy hits, it’s useless to predict exactly whether one might crumble or face a challenge head on.
“I don’t know how I’ve gotten through it,” she says. “It’s easy to say I have a dark sense of humor and a family support system and that’s what’s got me through it.
“But there are so many things that I don’t even recognize that have gotten me through it — little, insignificant things, like someone holding a door open, or my dog not jumping on me when I walk through the door.”
In a matter of months, she’s come to know that her path forward is uneven and strewn with obstacles that will take time to overcome.
“Like obviously, in the beginning,” Jordyn says, “I’m running into everything. I keep stubbing my toes. Everything is in the way and everything is so loud. But now, a good portion of the time, I don’t even think about it.”
Except when she is forced to.
Stomach pains in early May would send her to Children’s Mercy Hospital for nearly a week out of concern that the symptoms could erupt into a reaction that could steal another one of her senses or leave her dead. She missed a Smithville High School journalism banquet. She missed her sister Sidney’s graduation from Pittsburg State University.
“Making the best of it,” her mom, Kendyll Walker, texted from the hospital.
Her sister Samantha tweeted a goofy video of Jordyn sitting up in the hospital bed with her mom and listening to tenor Josh Groban sing “You Raise Me Up.” As he reached his soaring high notes, they raised their arms in mock exaltation and burst into laughter.
Finally, some answers
By late May, the family’s hopes would be similarly lifted when Jordyn, Samantha, their mom and dad, Keith Walker, traveled to the National Institutes of Health in Bethesda, Maryland.
Ever since Jordyn nearly died two years ago in North Carolina, Keith — intense, driven and with a scientific bent — had made it his mission to find clues to his daughter’s illness. Jordyn has had a fraught relationship with him over the years, finding his input at times as overbearing as it is helpful. But he called doctors, scoured research, set up appointments at the Mayo Clinic and other places trying to find answers.
After Jordyn’s story went viral, concerned strangers on Facebook offered the family leads. One was a former NIH patient, alerting the Walkers to the Undiagnosed Diseases Program, led by the NIH’s National Human Genome Research Institute.
Launched in 2008, the program helps patients like Jordyn — adults and children with mysterious conditions that have long eluded diagnosis. Thousands of families over the years have applied to be evaluated by the program’s researchers. Only a fraction get seen.
Over five days, Jordyn would be questioned and tested, she’d sit through 10 consultations with a team that included a geneticist, an immunologist, rheumatologist, ophthalmologist, dermatologist and doctor of internal medicine. They’d draw some 30 vials of blood from her veins, plus samples from her mother, father and sister. They would study her genes.
“The doctors, when they came in, they had to put on hazmat suits,” Jordyn says of the precautionary yellow gowns and gloves.
She would post on Instagram: “51 vials of blood, 200 pictures of my eyes, 1 gallon of urine, 25 consultations, 1 biopsy, 20 full-body pictures, 5 days, Endless bruises, scratches, pokes, and tears. But I got a sweatshirt out of it so it’s cool.”
By week’s end, they would have a possible answer, shedding more light on Jordyn’s condition than the family has ever had.
Theirs was not a precise diagnosis (her case is still being evaluated), but in some ways it would offer a new start for Jordyn, relieving her to some degree of the fear that her body would betray her again.
The NIH researchers believe that whatever is afflicting Jordyn shares some similarities to an extreme form of a rare genetic disorder — hereditary angioedema type III — that causes body tissues to swell.
Only 1 in 50,000 people, about 6,000 in the United States, have the disorder in any of its three varieties. Of those people, about 85 percent have type I and 15 percent have type II.
Type III is so rare — representing less than 1 percent of cases — that odds are a doctor would never encounter a single such patient, much less come up with a correct diagnosis and treatment.
In this group, Jordyn’s disorder is the rarest of the rare.
“This is definitely the worst version of this that anyone has ever seen,” said Danica Novaćić, Jordyn’s internal medicine physician at the NIH. “I’ve certainly never seen a case like it.”
The U.S. National Library of Medicine’s description of angioedemas in general reads as if Jordyn wrote it herself:
“Hereditary angioedema is a disorder characterized by recurrent episodes of severe swelling (angioedema). The most common areas of the body to develop swelling are the limbs, face, intestinal tract, and airway. Minor trauma or stress may trigger an attack, but swelling often occurs without a known trigger.
“Episodes involving the intestinal tract cause severe abdominal pain, nausea, and vomiting. … Swelling in the airway can restrict breathing and lead to life-threatening obstruction of the airway. About one-third of people with this condition develop a non-itchy rash called erythema marginatum during an attack.”
A few of Jordyn’s past physicians, Novaćić said, had been on the right track, even performing the appropriate genetic test for the disorder. But the test came back normal. Type III, Novaćić said, is too rare for the test to pick up.
A hugely important aspect of the disorder: Nearly all of the prime drugs Jordyn has been given throughout her life — antihistamines and the corticosteroid Prednisone — are powerless against it.
“They threw everything they could at this,” Novaćić said, “but she wasn’t responding. It wasn’t helping.”
In late May, Jordyn left the NIH with a new treatment plan that works on two fronts.
The NIH team suspects — although is still not certain — that Jordyn may have a mutation in a gene that plays a role in triggering inflammation. Results of her genetic tests will come back in several months.
It’s also possible, Novaćić said, that Jordyn’s swelling is linked to her colitis as well, that she may have a “leaky gut.” Her intestines may somehow ooze something into her bloodstream that causes her tissues to erupt.
“Each time she has had the bad swelling problem, it has come a few days into a colitis episode,” Novaćić noted.
Should Jordyn have another colitis episode, the NIH has sent her home with the injectable drug anakinra, which has been genetically engineered to help block inflammation. The drug is not typically used for colitis, but the NIH studied Jordyn’s cells and found that it should work in her case.
If the angioedema erupts after that, she is also armed with a second injectable drug, Kalbitor, now sitting inside the Walkers’ refrigerator.
“In a perfect world, one would go to the ER, say ‘I have angioedema,’ and they would immediately have access to this medication,” Novaćić said. “Well, this is a relatively new medicine, and not a lot of hospitals have it. They would have to order it from somewhere. It would take two days to get it to you.
“In the meantime, this poor girl could die.”
So the NIH bought it for Jordyn and sent it home with her. The staff also gave her a note on NIH letterhead that the Walkers are to give the ER doctors insisting she get the medicine in her possession.
“That should do the trick,” Novaćić said.
Controlling colitis is also key.
“They know for certain that, whatever it is, it is stress-driven,” Jordyn says.
She is now on Lexapro, a prescription for both depression and anxiety.
The stress doesn’t have to be massive, such as a death in the family. It can be smaller, such as anxieties over school, or the built-in tensions that come with friends and family.
“It is the little things that will start to make me swell,” she says.
“Feel like Wonder Woman”
Jordyn is thankful to have greater certainty, although more for her parents, in some ways, than even for herself.
“It’s a big relief on my mom, especially my mom,” she says. “She knows it’s not (triggered by) some medication we don’t know about. It’s not some allergic food reaction. It’s given her a bit of spiritual Xanax.”
Jordyn is philosophical.
“Obviously, it doesn’t change the outcome,” Jordyn says. “I’m still blind. I’m still dealing with the trauma of it. But it could change the future.
“Now that I have a treatment plan that actually works and does something, I couldn’t care less that I know what it is, as long as I know I can stop it again.”
Even before the trip to the NIH, Jordyn came to an accommodation with her new life.
She knows that it will pitch her between good days and bad, and knows, too, that she will be defined by her capabilities plowing forward.
“There are some days when I’m absolutely perfect,” she says. “You’re not on my level. Other parts of the day, I won’t eat, because I feel like I’m fat. … I can’t see my fat rolls. But I can feel them. I gained like 40 pounds on the Prednisone. I think it was better that I could not see it. I think the outcome would have been worse if I could see my body grow.”
Off the drug, her body already is quickly slimming.
“I can open my eyes again,” Jordyn says, “without my face stretching.”
In her blindness she still at times sees flashes of shapes: planets, leaves, snowflakes. There are colors: “blackish green, like the ocean at night,” she says.
And she sees her priorities.
“I used to kind of ponder the little things, and not in a good way,” she continues. “I would kind of hold my breath if (someone) looked at me in the wrong way. Or I would cry over a D-minus on a geometry quiz, or be pissed off at my friends for not responding in the way I wanted them to.
“It all just seems so small now. Now I don’t even wear makeup. I don’t even care.”
What she does care about: appreciating who she is, being grateful for what she has, maybe even being an example for others.
“There’s not even a word to describe it, how absolutely spectacular it is that I’m in this body,” she says. “I can control every movement I make from the tips of my toes to the top of my head. …
“I hope that people who meet me, who see my story, or know for a split second who I am, can get something out of me, even if it’s something small, like hugging your mom, or putting your phone down and going to the park for a little bit, or following a career path you want.
“I didn’t know I wasn’t going to see my mom ever again. I didn’t know I wasn’t going to be able to perfectly design my apartment the way I wanted it in the future because I’m not going to be able to see the paint colors. But other people can. I think they need to be able to cherish it.
“And they need to not think of life as just wake up, go to school, get a job, retire and die. We have 75 to 80 years to do what we want. Why should you waste that doing something you don’t love?
“I almost died when I was 14. I almost died when I was 15. And, I mean, I probably would have been something that I didn’t want if I had grown up and not had these experiences.”
Even her understanding of what it means to have a great day has changed.
“Just sitting there petting my dog, or eating breakfast,” Jordyn says. “When I was in the hospital, I couldn’t feed myself. I couldn’t pet my dog; he wasn’t there. I couldn’t get dressed by myself. I couldn’t even go to the bathroom by myself.
“Just slowly getting back to my independence is the best part of my day. Just being able to sit there and say, ‘Holy crap, I’m doing this.’ I couldn’t spread peanut butter on bread a week ago. I couldn’t have gone to the bathroom by myself, shaved my legs. It’s just good to be independent. It makes me feel like Wonder Woman. But, like, less cute.”
And like the superhero, she yearns to make a difference. She could be a motivational speaker, a life coach or psychologist. Or a comic.
“When people see me 10 years from now, I want them to know I’m happy,” she says. “I don’t want them to see me in a dark light. I want them to see me for who I am.”
On May 15, she tweeted again, this time about “Avengers: Endgame.” She went with Samantha, who whispered her the action scene by scene:
“The ending of Endgame really hit me hard. … I never saw it coming.”
On May 27, another, a three-second video: Jordyn walks down a Walgreen’s aisle, swats a box off a shelf then turns, diva-like, to the camera:
“The blind bandit strikes again.”
“I want in 30 years,” Jordyn says, “to have like hundreds of stories to tell strangers, or my family, or people I’m, like, speaking in front of.”
In June, she’s thinking about summer classes at Alphapointe, another blind school and advocacy group which has been helping the visually impaired in Kansas City for more than a century.
In July, she is hoping to take off for California with her dad, who on the day Jordyn went blind tried to inspire his grieving daughter with the inspirational story of blind archer Janice Walth, a Paralympics world champion.
At the time, Jordyn, an avid archer, wanted to hear nothing about it. Now she’s arranging to meet and shoot with Walth.
“I’m excited,” she says. “I’m ready to kick some ass at competitions again.”
Jordyn also recently broke out her computer, taking charge of her own narrative. Her story begins:
“On December 12th, 2018, I went completely and unexpectedly blind. … Grab a snack, get cozy under a throw blanket and buckle up. I have no reason to lie to you, reader. My story needs no exaggeration. . .because even if I wanted to tell a lie, that’d probably be a lot less interesting than the truth …”
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.