Olivia Goodreau was six years old when she was bitten by a tick. Shortly after that, her body ached, she experienced brain fog, headaches, tremors in her right hand, and blackouts. Getting out of bed to go to school was close to impossible.
Her parents took her to more than 50 doctors. “I had MRIs, cat-scans, spinal taps, EKGs (electrocardiograms), EEGs (electroencephalogram), a liver biopsy, upper and lower endoscopy, my adenoids removed, and over 100 blood draws,” she says.
The health issues continued for years. She had Lyme disease, but because it can mimic other illnesses, she was first misdiagnosed with Wilson’s disease, and a few doctors even believed she was faking her symptoms.
“This went on for 18 months,” she explains. “My 3rd grade teacher would call my mom and say I couldn’t lift my head off my desk. My mom said she’d cry after talking to my teachers because she didn’t know where else to take me. She knew I was very sick.”
Finally, in 2013, she got a correct diagnosis. “This doctor put me on 30 days of antibiotics and said I would be back to normal. By the fifth day, my mom saw the twinkle in my eye that had been missing for 18 months. I felt much better. My third grade teacher called her and said, ‘I just met Olivia for the first time, and she is really funny.’ They both started to cry.”
Last April, Olivia—who will likely have Lyme disease for the rest of her life–decided to do something; Olivia started the LivLyme Foundation, a 501 ( c) (3) nonprofit that provides financial assistance to families of children suffering from Lyme disease, gave grants to scientists for Lyme and tick-borne disease research, and educates people around the globe about Lyme disease.
So far, she has given out four grants to two Stanford researchers, one to the research team at the University of New Haven, and one to scientists at Johns Hopkins. 31 families with children between the ages of 5 and 20 have also received financial help from Olivia’s foundation to pay for their Lyme medication.
According to Olivia, her nonprofit is desperately needed. “Most insurance companies won’t cover people with Lyme disease, or if they do, they do it for the short term,” she said. But Lyme disease can be a long-term disease with ever increasing costs. Doxycycline, an antibiotic routinely prescribed for treatment of Lyme disease has increased from $.03 per pill to more than $5 per pill since 2014. Many patients take two of these pills per day. Thanks to her foundation, some children who couldn’t otherwise afford this medicine will be able to get the treatment she needs.
In September of 2017 and 2018, she held the Liv Lyme Summit. It brought Lyme researchers from all over the globe to her home state of Colorado to discuss and share what they’re working on.
“For years, I’ve been wanting to sit opposite the CDC, the NIH, the Department of Health, and the FDA,” said Dr. Richard Horowitz, an East Coast doctor specializing in Lyme disease. “People are listening, looking at the science. I’m very encouraged by the collaboration.”
He attended the Summit because, “You can’t say no to Olivia,” he said.
“Olivia has been one of those people who generates a whole movement,” says United States representative Diana Degette of Colorado, who was also at the Summit. “ She has raised awareness. The Foundation has raised awareness and it’s really something people don’t think about. Now they do because of Olivia and the Foundation.”
She even recruited Mark Hamill, Imagine Dragons, and the cast of Modern Family to take the Lyme Challenge, an awareness campaign where celebrities take a bite out of limes to show their sour faces.And in addition to her work with her summit and foundation, Olivia has launched TickTracker, a free, global app sponsored by Microsoft that shows people which ticks are in their area.
Hosting a gala, an annual summit, educating as many people as possible about Lyme, and constantly thinking ahead for finding a cure are all part of Olivia’s mission. But there’s a lot more work to do. According to the CDC, approximately 30,000 cases of Lyme disease are reported by state health departments. However, this number does not reflect every case of Lyme disease that is diagnosed in the United States every year.
On September 16, Olivia received the Gloria Barron Prize for Young Heroes, which honors 25 outstanding young leaders between the ages of 8 and 19. The top 15 recipients are awarded $10,000. Olivia is using that money to “help kids pay for their medications and treatments,” she said.
As for herself, she hopes to be Lyme free by the time she goes to college. “It’s optimistic, but that’s my goal,” she said.