Olivia's Story

The summer in between my 1st and 2nd grade year, when I was 6, I was bitten by a tick in Missouri. We did not see the tick and I did not have the “bulls eye” rash that happens in about 50% of people bitten by Lyme-carrying ticks. Those 50% are very lucky because you go on antibiotics for 30 days and it gets rid of the Lyme disease.

When my 2nd grade year began, I started having body aches, brain fog, headaches, tremor in my right hand, and I started blacking out. I felt horrible and it was very hard to get out of bed. My 2nd grade teacher noticed that something was wrong in October. I think the blackouts scared my teacher and my parents the most, and they all agreed something was wrong with me.

 

My parents took me to over 50 doctors. I had MRI’s, cat-scans,spinal taps, EKG’s, EEG’s, a liver biopsy, upper and lower endoscopy, I had my adenoids removed, and over 100 blood draws. I spent a week in the hospital. I was misdiagnosed with Wilson’s disease but the biopsy showed otherwise. Later, the doctors thought that maybe I was making this up. This went on for 18 months. My 3rd grade teacher would call my Mom and say that I couldn’t lift my head off my desk, so they were letting me lay down to do my math. All my teachers would beg my parents to figure out what was wrong with me, and as my Mom tells the story, she would get off the many phone calls and cry because she didn’t know where else to take me, but knew that I was very sick.

Finally, another doctor did more tests and took the time to see what the other doctors had missed. On Jan. 29, 2013, I was diagnosed with Lyme disease. This doctor put me on 30 days of antibiotics and said I would be back to normal. By the 5th day of being on the antibiotics, my Mom said, she saw the twinkle in my eye that had been missing for 18 months. I felt much better and my 3rd grade teacher called my Mom and said, “I just met Olivia for the first time, and she is really funny.” They both started to cry.

Unfortunately, after my 30 days of antibiotics were over, I started to nose dive again. My parents knew they needed to find a Lyme specialist. My Mom’s friend knew a boy who had Lyme disease and was seeing a Lyme specialist. He had a two year waiting list, but after he heard that I had only been sick for 18 months and how young I was he took me on as a patient. The Lyme doctor found that I have 2 co diseases. Ticks can carry hundreds of other disease like West Nile Virus and Rocky Mountain Spotted Fever. I have bartonella and babesia.

My Mom was getting worried because I was not getting better. So for 3 years, I bounced around to different Lyme doctors in Colorado but I was not getting better. My 54th doctor diagnosed me with Bartonella, Babesia, Repalsing Fever, POTS Syndrom, low immunoglobins, and Anti-1 tripsone deficiency in my liver.  This was all from one tick bite, that I never saw & never had rash.  And 53 doctors missed everything. What 2nd grader would make up a tremor in her hand, blacking out & not being able to hold up her own head.  While my friends were on Spring Break, I had a liver biopsy, spinal tap & hundreds of tests, that I did not need.

A “Lyme day” is where my body just shuts down and all of my symptoms come back. My muscles and joints hurt, it feels like I have the Flu, and sometimes my eyesight is affected. So we are always changing my medicine.

Last April, I was told that I would have Lyme Disease for the rest of my life or until there was a cure. It was hard to hear and I was very sad. My parents promised me, that for the rest of their lives, they would always help me with my battle against Lyme.

 

I decided that I need to do something to help find a cure for Lyme so I started my own nonprofit called the LivLyme Foundation. My mission is to raise money to help children that cannot afford their Lyme medicine and to give money for research to find a cure. We have met a lot of families that cannot afford the Lyme drugs and Lyme doctors for their children because most insurance companies will not cover people with Lyme disease. So I would like to help children with Lyme. There is also great research going on to find a cure, and new drugs for Lyme and I think my foundation can make a difference.

Please remember that ticks do not discriminate. Ticks are in every state and can cause disease and infections in anyone. While Lyme disease is most often found on the east coast, Midwest, and pacific northwest, there are cases of Lyme disease in every state because we travel and ticks can travel too. It is the fastest spreading vector borne illness in the US. Lyme is also found on every continent. 200 children a day are diagnosed with Lyme disease.That is 4 school buses of children a day diagnosed with Lyme. 350,000 people are diagnosed every year with Lyme in the US. Most people are misdiagnosed 3-10 times. It takes usually 5-15 years to get a correct diagnosis. 40% of Lyme Patients end up with long term health problems. We are ALL one bite away from getting Lyme Disease. It is a huge epidemic and we need to do something about it. I know the LivLyme Foundation can help kids and find a cure.

We must find a cure.

– Olivia

Olivia has made significant contributions in the field of tick borne diseases and beyond, including:

  • Pioneered the development of several free mobile applications, including TickTracker and Tickmojis App, with her latest addition being LongHaul Tracker.

  • Founded the LivLyme Foundation in 2017 at the age of 12, with a mission to:

    • Raise funds for children needing Lyme disease treatment.

    • Advance research on Lyme and other tick-borne diseases.

    • Educate the public about the dangers of ticks.

  • Distributed over 100 grants to children aged 2–21 across 49 states to support treatment for Lyme and tick-borne diseases.

  • Awarded scientific grants to prestigious institutions such as Stanford University, Johns Hopkins Bloomberg School of Public Health, and the University of New Haven.

  • Published her memoir, But She Looks Fine – From Illness to Advocacy, in May 2023, chronicling her journey from patient to powerful advocate.

  • Testified before the U.S. Department of Health & Human Services, Tick-Borne Disease Working Group, House, and Senate in Washington, D.C., including closed-door sessions with Congressman Chris Smith of New Jersey.

  • Played a key role in the passage of the Kay Hagan Tick Act, securing $150 million for tick-borne diseases, and lobbied for an additional $91 million with the Center for Lyme Action.

  • Presented at top institutions and organizations including:

    • The U.S. Department of Labor

    • The White House

    • Stanford University

    • Harvard University’s Dean Center for Tick-Borne Illness

    • The Bill & Melinda Gates Foundation

  • Honored with multiple awards, including:

    • “The Bravery Award” from Stanford University

    • “Gloria Barron Prize for Young Heroes”

    • “Olivia Goodreau Day” proclaimed by Colorado Governor John Hickenlooper on April 8

  • Organized annual LivLyme Summits, bringing together leading experts and advocates, educating over 1,700 attendees from 34 countries.

  • Recognized as the youngest inventor to participate in the U.S. Department of Health and Human Services’ The Opportunity Project (TOP) with her app, TickTracker.

  • Selected for a 2-year fellowship with the U.S. Department of Health & Human Services’ LymeX Innovation program.

  • Launched LongHaul Tracker, now part of two National Institutes of Health (NIH) research grants.

Olivia’s unwavering dedication extends beyond her activism, and she is a multifaceted individual with hobbies like drawing, reading, and various outdoor activities. Her future is bright as she is attending UCLA, majoring in public health and double minoring in entrepreneurship, and history. She will be graduating early and plans on getting her PhD in public health and epidemiology. Olivia’s exceptional work and advocacy continue to positively impact those affected by tick-borne diseases and long-haul illnesses.