When Conyers Middle School sixth-grader Kylee Davis began breaking out in painful lesions in August, it threw his mother, Felicia Davis, for a loop. 

Kylee had experienced a less intense version of the same painful symptoms back in 2008 when he was a second grader at Barksdale Elementary. Then, the disease had thankfully and just as mysteriously faded. But now, it came back “with a vengeance,” said Felicia.

“He had the lesions on his head, ulcers in his mouth, also his ears and nose,” she said. He also had crippling body pain, trouble breathing and a fever that lasted for weeks. Even now, Kylee stays at his aunt’s house because he has difficulty walking up stairs at his home.  

After weeks of hospitalization, a revolving door of doctors from Children’s, Emory, Grady and other facilities and a battery of tests and biopsies, Kylee was finally diagnosed with Kikuchi-Fujimoto Disease. 

“I’m from Conyers, Georgia. I’m like, ‘Um, what is this disease and how did my son get it?’” said Felicia. 

Kikuchi Disease is a rare, non-genetic, non-contagious disease first described in Japan in 1972 that occurs more frequently in females and has been diagnosed in a handful of people in the United States, according to medical websites. Little is known about it and few treatment options are available.

Despite reaching out to hospitals such as Johns Hopkins, St. Jude’s in Memphis, and the Centers for Disease Control, Felicia was left with more questions, equally baffled doctors and what little information she could find on the web.

“All I have is Google, and Google is not telling me nothing,” said Felicia. “I’m not a doctor but I’m a mother and I know something is not right.”

For now, Kylee was put on steroids and anti-inflammatory drugs, which helps reduce the lesions but can have debilitating side effects. From the drugs, Kylee gained more than 30 pounds in one month and his eyes are at risk for cataracts. His body is stretching and painful from the steroids, but his muscles are weak and leave him needing physical therapy. 

 “It’s been a battle back and forth, in and out the hospital, in and out the doctor’s office. He’s been getting new symptoms every day.”

A few weeks ago Kylee’s hands and feet began turning white and trembling. After rushing him to the hospital, doctors found Kylee had been bleeding in his stomach and needed a blood transfusion.

The constant doctor’s visits and vigilance have taken their toll. Felicia is struggling to make ends meet and to keep the lights on. She had not been able to work full time since the disease flared back up. She is appreciative of the help from the community, from various fundraisers to donations to the GoFundMe account and Wells Fargo account to help from local businesses in fixing her vehicle for the doctor’s office visits. The Major League barbershop is also holding a fundraiser, donating half their proceeds Jan. 5-10.

But she soldiers on for Kylee.

“When he wakes up and I see him, that’s pretty much what keeps me smiling,” said the single mother, looking at her son with love in her eyes. “It’s just trying to get the pieces of the puzzle. We’ve got to talk to the right person.” She said she has faith that God is going to put the right person in her life who will know more about how to treat this disease. 

 “It’s hard as mother to see your son suffer and you can’t do nothing about it,” she said. “I wouldn’t want nobody’s child to suffer the way Kylee has suffered.”

Kylee, who turned 13 a few weeks ago, wants to get back to being just a normal child. He is homeschooled with a tutor provided by Rockdale County Public Schools but misses being in school and being around other children. He likes to draw and create and build things and dreams of attending the Savannah College of Art and Design someday.

Kylee is indeed a normal 13-year-old. For Christmas, besides finding someone with information for a cure, he said, with a glint in his eye, he’d also love a go-cart. 

How to Help Kylee:

GoFundMe account for Kylee Davis: www.gofundme.com/enhxik

Wells Fargo, donate to the Research for Kylee’s Kikuchi Disease account

Major League Barbershop, 1427 Hwy 138, Conyers, will donate 50 percent of all proceeds during Jan. 5-10 

Copy Central will print on a sponsorship banner the name of any business that donates $50 or more 

T-shirts, hats and hoodies for sale, 770-875-5305

Contributors:

Courtesy Ford and manager Ricky Rutledge, for fixing their truck for Kylee's doctors’ visits; Discount Tire and manager Hugo Veliz for providing new tires; Churches including Crawfordville Baptist, GFCC, New Hope Baptist, Eastside Baptist; SoundPro; Lightning Pawn, Conyers; Real Cherry’s Ice Cream at Stonecrest; Outback Steakhouse in Conyers; Copy Central; On Common Ground; Conyers Middle School