Local teen battles mysterious illness

Andrea Rose
Kourtnee Johnson

Looking at Kourtnee Johnson, she doesn't look sick. The 17-year-old usually has a smile on her face when she is around those outside her family, but her grin belies what's going on inside her petite frame.

For the past five years, the Antrim Township teen has had good days and bad days.

Her joints swell. She gets unexplained rashes. Hives come and go.

Her body is chronically tired and achy and sometimes she can't swallow.

"Sometimes, no matter what I do, I have shooting pain in my arms and legs," she added. That's when she uses a cane or a wheelchair to get around.

She can't remember things, either.

"It's like I have the memory of a dementia patient," Kourtnee said.

At the height of the symptoms, Kourtnee spent a month in bed because she simply didn't have the strength to get up.

She has developed a sensitivity to mold, which increases her symptoms and prevents her from going many places, including school.

"I can't go to school," said the high school junior. "I do online schooling."

She had to quit all her activities, including band, chorus, swim team at the YMCA, Girl Scouts and Venture Crew.

"I sit in bed and do school work, then I may play video games or watch Netflix. If I feel up to it, I water my plants," she said as she sat crossed-leg on a sofa in her living room. "I'm pretty much trapped here."

Not the common cold 

Until about five years ago, Kourtnee was healthy.

"She was rarely sick," recalled her mother, Tammy Johnson.

Suddenly, however, her health began to decline.

"When it started, it looked like a common cold," Tammy said of her daughter, who had headaches, was tired, achy and had coughing episodes.

"I had full body pain, I was nauseous, dizzy," Kourtnee added.

"She slept most of the time," Tammy said.

Kourtnee went to the doctor who told her it was a respiratory infection and prescribed antibiotics.

But things didn't improve and they returned to the pediatrician, who sent them to a specialist.

"Everything in her body is inflamed," Tammy said doctors told them.

She was tested for Lyme disease.

At one point, they assured her she had juvenile rheumatoid arthritis. Then, it was fibromyalgia and patellofemoral pain syndrome. But none of the treatments touched her pain.

"We've had a lot of different diagnoses," Tammy said.

They finally sent her to Children's Hospital of Pennsylvania, where she participated in a program that promised her relief.

"The program made her worse, not better," Tammy recalled. "They wanted to give a 14-year-old oxycodone and send her home."

As a mother, Tammy was worried. "No one has pain for no reason at all," Tammy said.

Kourtnee is the oldest of her three children and, like any mother, she wanted to help her child.

She spent hours online looking for clues. She turned to social media looking for another doctor who might be able to help.

"I had to start thinking outside the box," Tammy said.

It turned out to be her son who Tammy said provided the biggest clue.

He received the HPV vaccine and had a bad reaction to it.

"I started thinking back. That's when this all started," Tammy recalled. "Right after Kourtnee got the HPV and flu vaccines."

Losing friends and getting help 

If feeling miserable most of the time and not being able to do things other teenagers do is disheartening, it's nothing compared to the other side effects of her illness.

"A lot of my friends didn't know how to deal with it and some ended up picking on me," Kourtnee said. "It made me feel terrible. I was in so much pain and no one believed me."

"She lost all but one friend," her mother said. "I understand. It's like an invisible illness and unless people have something you can see, they think you're lying."

Kourtnee said she often smiles beyond the pain. "It's not like I'm gonna act sick and miserable 24/7," she said. "No one would want to be around me."

Her illness has taken a toll on the family as well.

Tammy stays home to care for her daughter. Paul works for the federal government.

"We try to be parents to all three of our children," Tammy said. The couple has son Devon, 15, and Jenna, 13. "We've tried to spread it around, but it's hard."

Kourtnee said her relationship with her siblings has changed, too.

"I'm not as close as I used to be with my brother and sister," Kourtnee said as she wiped tears from her cheeks. "I just don't feel good. They've grown up and I've missed things."

The family believes they have finally gotten an accurate diagnosis for what's going on with their daughter.

They found a specialist in Virginia who stepped in to help.

"He believes she has chronic inflammatory response syndrome caused by the HPV and flu vaccines. The doctor said with those two together, it was just too much," Tammy said.

While she is no longer a fan of vaccinations, Tammy said she understands her family's situation may be unique.

"What I've learned is it depends on what's in your genetic makeup," the mother explained. "There's something in our genetics that affects them."

The doctor has prescribed a program of drugs and supplements to try to get Kourtnee's system back to normal. "They said it's completely curable, but it's going to take a while," Tammy explained.

There is a new stem cell treatment out there that promises to speed healing, however insurance doesn't cover it. The first round, which she took last month, was $6,300 and then $1,600 each round after that and that's not including doctor visits and supplemental medications.

But the expense is worth it so far. "We're seeing great things already," Tammy said of the new treatment.

The family has set up a GoFundMe page for friends and family to help.

"This is not an easy ask for us," Paul said. "Last year, we spent $38,000 on medical stuff. This year, we're already into $10,000. We're not at the point where we're begging for food. We just need help to provide her the care she needs. The medical bills are going to keep coming until she's better. When it's your daughter, you'll do anything. Any donation is welcomed and appreciated."

Meanwhile, Kourtnee is just hopeful the treatment works.

"I'm hoping to be able to return to school to graduate with my class. I want to go to classes and do all the in-class stuff. I want to be able to go to college," Kourtnee said, showing off a handful of bright orange Post-It notes with names of colleges she hopes to be well enough to apply to to study wildlife biology.

"We're just living day-by-day," Tammy said. "We're just hoping to get her better so she can live a normal life and go to college."