Tuesday, October 27

Teen with lyme disease raising money and awareness to help others – DailyTrib.com

In middle school, Maura Ibanez started experiencing striking symptoms: chronic pain in her back, fatigue, aching joints. Some days, she’d come home and collapse from exhaustion right in the doorway. Doctors couldn’t pinpoint the cause, but it felt familiar to her mother, Sharon Ibanez.

“We complained to doctors all the time. She was hurting,” Sharon said. “We were told to chalk it up to growing pains. I went through years of that same kind of pain, and nobody could figure out what was wrong with me.”

About two years ago, after a slew of doctor’s visits and tests, Maura was diagnosed with late stage lyme disease, the same disease that her mother had been suffering from for years.

“My mommy radar was going off with her,” Sharon said. “It took until after I was diagnosed, and then I started noticing some connections.” 

The tests and the treatment are expensive, so much so that Sharon had to forego her own treatment for a time in order to pay for Maura’s. With the help of grants, they were able to cover some of the costs associated with the chronic disease.

“We spent over $16,000 last year,” Sharon said. “It’s not a poor man’s disease. I mean, it makes you a poor man, anyway.”

Lyme disease is caused by the bacterium Borrelia burgdorferi and sometimes Borrelia mayonii. The bacterium is transmitted to humans by bites from infected blacklegged ticks. 

Now Maura, a 16-year-old student at LBJ High School in Johnson City, is giving back through the Lyme Warrior organization, raising money and awareness online so others can receive the kinds of grants that helped pay for her expensive treatment. 

“I want the cause to have attention,” Maura said. “I don’t want the attention myself.”

To raise money, Maura set a series of goals on her Lyme Warrior Throwdown page, pledging to complete a challenge for each benchmark. At $100, she dyed her horse’s hair lime green. At $200, she let her mom do her makeup while blindfolded. At $600, she would run 10 miles.

So far, she’s blown past all of her goals and raised $1,500. The money will go toward grants for other teens seeking the often-expensive lyme disease treatment.

Fundraising isn’t the only thing Maura has put herself into. Despite the disease and the pain, she still participates in cross country and maintains an active lifestyle.

“Cross-country practice takes a lot out of me. It didn’t used to as much, but now, I’m always really tired afterwards, even if it’s an easy day,” she said. “I should be used to it by now, but it’s gotten worse. It’s also hard to focus during school work, and it’s hard to retain anything. It’s frustrating.”

Maura is also a member of the Blanco Phoenix Riders Equestrian Drill Team, Blanco County 4H, and other organizations.

“We are pretty highly functioning. We’re very lucky for that,” Sharon said. “Not everyone is so lucky.”

In 2018, there were only 20 confirmed cases of Lyme disease in Texas, according to the Centers for Disease Control and Prevention. According to the advocacy group the Texas Lyme Disease Association, many doctors in Texas believe that lyme disease is not endemic to the state, and patients are often told it doesn’t occur here. Many chronic and late-stage lyme disease patients go out of state for diagnosis and treatment.

alex@thepicayune.com