Discover How Her Lyme Diagnosis Fueled a Global Fight for a Cure
by Carin Gorrell
As part of our Live Learn Lyme campaign In honor of Lyme Awareness Month, RawlsMD is supporting and raising awareness about the LivLyme Foundation, an incredible organization dedicated to providing financial assistance to families of children struggling with Lyme disease and funding research for finding a cure.
We interviewed Olivia Goodreau, an inspiring young woman who founded the LivLyme Foundation after contracting Lyme disease as a young child. Learn more about her, the organization, and how you can support their efforts in the video and transcript below.
Carin Gorrell: Hi, Olivia. Thanks so much for taking some time to chat with me today.
Olivia Goodreau: Yeah. Thank you so much for inviting me.
Carin: Yeah, we’re so excited. So, I want to start with talking about why we’re here. Can you tell us a little bit about your story, about Lyme disease, and you were six years old, right, when you contracted it?
Olivia: Yes. So, summer, going into my second grade year, I was bitten by a tick at the Lake of the Ozarks in Missouri. I did not see the tick, and I did not have a bulls-eye rash.
So, over the course of 18 months, I saw 51 doctors until I was finally diagnosed with Lyme disease. Before I was diagnosed, I was being diagnosed with Wilson’s disease and told that I would be dead by the age of 40. People thought that I was making it up. Then, of course, they were like, “Well, maybe you’re just dehydrated and stressed.”
So, I had to deal with a lot of that until I was diagnosed with Lyme disease. I was put on 30 days of antibiotics, so that I would be fine. I did feel okay during those 30 days, but then after that, I started to get worse again. So, it took another three years and four more doctors for me to find my Lyme doctor. I was also diagnosed by him with Bartonella, Babesia, pox syndrome, relapsing fever, and an anti-one-trypsin deficiency.
Carin: That’s a lot. You got all the coinfections, so it’s such a normal, unfortunately, experience. I’ve been learning a lot about how Lyme can manifest a little bit differently in kids and adults, and the challenges can be a little bit different. So, tell me what was especially hard for you.
Olivia: Definitely playing sports and being active. When I tried to run, it felt like my feet were on fire, and it really hurt to run, so I had to quit soccer and lacrosse, and I couldn’t really play outside in second grade at recess and stuff like that. I tried volleyball, and that was great for a long period of time until I feel like Lyme disease was like, “Yeah, you know what? We’re not going to let you do that either.” All of a sudden, I started getting really bad back pains, so I had to quit that too.
Thankfully, I’ve been getting a lot better now since the second grade, and I’ve been able to start up volleyball again, and I’m working my way up to getting back to soccer.
Carin: Nice. Volleyball’s my sport. What position do you play?
Olivia: Well, I like… I’m a setter. That’s my favorite.
Carin: Nice. I was a terrible setter. So talk to me about school too. Did you have any specific challenges either with classwork or with your friends?
Olivia: With classwork, I had to work twice as hard just to get the average grade since I had brain fog, a lot of it, and it was really bad. Also, at times, my neck muscles would give out, so I wouldn’t be able to hold up my head, and that was difficult with writing and doing stuff like that. I also had a tremor in my right hand, so my handwriting was very messed up. I’m going to say that.
Then socially, a lot of people believe that I was contagious, that I had something like the flu or the plague, so they avoided me in class. Not all people did. I had a few good friends that knew really what was going on, and I thank them so much for that since if they were not there, I probably would not be at school right now. They’re the only reason why I go back.
Carin: Well, that was going to be my next question. It actually was about support. I know that’s super important, so what about your family? How have they been supportive for you?
Olivia: Oh my gosh. If I did not have my mom and my dad and my brothers that I have right now, I don’t know if I would even be here today. They’ve been so supportive of me, and my dad is like the glue that holds the family together. My mom helps me so much with the foundation and the medication.
Then my brothers, they’re just there to keep me on my toes, keep me in check, make sure that I’m still having fun, and actually, recently, they thought that they were going to do something for the LivLyme Foundation and to help the cause. So, they are in the midst of creating a game where you can blow up ticks.
Carin: Is that a video game, a computer game?
Olivia: Yeah, it’ll be on your phone, computer, stuff like that.
Carin: Oh, that’s awesome. I can’t wait for that. I’ll get my kids to play that.
Carin: Let’s talk about the LivLyme Foundation. So, tell me, first of all, who came up with the name? I assume Liv is a nickname for you?
Olivia: Yes, so I came up with a name before I went to my mom with the idea. I was like, “You know what? It’s going to be the LivLyme Foundation,” since my nickname is Liv, and I’m living with Lyme, so that’s what the name is.
Carin: So tell me what inspired you to start the foundation.
Olivia: This is probably in the fourth grade. I was looking up stories about other people who had Lyme disease since I was curious. I didn’t do the like, “I’m not the only one that has Lyme disease,” and I came across a story about a mom and her son.
They were living in their car, so they could afford the boy’s Lyme medication. That story really stuck with me, and it got me thinking that I just couldn’t sit around here and do nothing while other people were suffering. So, that’s how the LivLyme Foundation was born.
Carin: That’s amazing. So, you’re raising funds to help kids pay for treatment and then also for research, right?
Olivia: Yes, funding for scientific research. They can find better treatments and a cure for Lyme disease since there is none.
Carin: How do you decide which researchers you want to work with?
Olivia: With all the grants that I’ve given them, I’ve actually Skyped them and interviewed them a bit, and I’ve gotten to see what their labs look like and what they’re working on and what they would use the money for. I think that that’s such an important part, because if they’re going to use the money that I give them on something completely different, then I’m not going to give it to them.
All the scientists that I met… I’ve given Dr. Jay [Rajadas] at Stanford two grants, Dr. Eva Sapi at University of New Haven one grant, and Dr. [Ying] Zhang at John Hopkins University one grant, and then I’m going to give Dr. [Kim] Lewis at Northeastern University a grant soon.
Carin: How much have you raised to date?
Olivia: Well, our third annual LivLyme Gala was on the 4th of May, so we broke a million dollars. We raised a million dollars that night.
Carin: That’s amazing. Congratulations. That is so cool.
Olivia: Thank you.
Carin: So, education I know is another big part of your mission, so if you’re talking to kids, other kids, what do you wish that they knew better? Kids who don’t have Lyme, what do you wish that they understood better?
Olivia: I wish if, one, they would check for ticks since that’s where it all starts. And I really hope that they would be more aware about what’s around them, especially what’s in their area.
And I wish that a lot of kids would be more open to people who are different, since that’s something that I struggled with, and I know that it’s not just Lyme patients who struggle with that. It could be kids with ADHD or in the LGBTQ community, and that really upsets me because everyone’s different. It’s not like we’re meant to just fit into this one mold like a person, and I just wish everyone did that.
Carin: Yeah, that’s great. I know. I feel like that’s a challenge for every single person out there, and yet we don’t talk about it, and it doesn’t seem to get better if we don’t. What about grownups? What do you wish parents knew?
Olivia: A lot of parents or just grownups that I met, sometimes they pity me, and they I guess underestimate me. They’re like, “Oh, yeah. I wouldn’t be able to do this. I don’t think you should do this,” and stuff like that. I just wish that they just, I don’t know, just give me a chance, maybe just see what I can do, and maybe just not jump to conclusions right away.
Carin: Well, I think you’re proving everyone wrong with this amazing foundation that you can do quite a bit. So, if they don’t learn, that’s their own fault.
You are very busy, obviously. You just had your gala last weekend. Your mom told me that you had a musical last night. Were you in the musical?
Olivia: Yes, I was in the musical. I wanted it to be an ensemble part because I was traveling at the time, and I’m pretty sure we had 16 rehearsals, and I only went to five of them.
Carin: Oh, you were busy. Was it good?
Olivia: Yeah, I think it was really good. We have an interesting class. We have a lot of energy, and I think that we did really well in the play.
Carin: Awesome. What else do you do for fun?
Olivia: Acting is fun. Public speaking, I know not many people might like it, but I do enjoy it. Again, just spreading awareness, and traveling. That’s what I do, and I’ve grown to love it.
Carin: Nice. What about when you grow up? Any thoughts on that? You seem like a very ambitious person. Any dreams?
Olivia: Well, if there’s no cure for Lyme disease by the time I go to college, I will definitely go to medical school to try and find one. If not, I don’t know. Maybe I’ll just continue the LivLyme Foundation and make sure that everyone with Lyme disease gets a cure for it.
Definitely, I will be helping and updating my app, TickTracker. So, TickTracker is a free global app in multiple languages that lets you see what ticks are in your area in real-time using geolocation. So, I’d definitely be helping out with that, and I don’t know. I think medical science is really interesting.
Carin: Yeah, so TickTracker, that’s an app you download onto your phone? Just so everyone knows what to do?
Olivia: Yep, and on the app, it has a tick sighting, and that’s if you see a tick on a log. It hasn’t been if you are bitten, you or your pet. So, you can take a photo of the tick, and you can post that out. Then everyone else will get that on their phone.
Then a tick bite, it’s where it’s on you. It’s bitten you. It’s on your dog. So, basically, we tell you how to remove the tick properly, and then we ask you to just fill out a small survey, just like how old you were, what gender you are, stuff like that. We’ve been getting a lot of really interesting data.
Carin: That’s great. Yeah, so that’ll be usable for the future. Then just so people also know, how can they support the LivLyme Foundation?
Olivia: Spreading awareness, definitely. I think that… Well, actually, May is Lyme Disease Awareness Month, and if you put a pinwheel out on a front lawn, that also helps support kids and bring awareness to kids with Lyme disease. So, right now, my front yard is covered in pinwheels. Some are letting neighbors take the pinwheels and put it in their yards to spread awareness.
So besides spreading awareness, again, you can donate to the foundation. Every penny counts. All of that will be going to kids that cannot afford their Lyme disease medication and scientific research for a cure. So, it’s definitely going to good causes.
Carin: Fantastic, and we can do that on your website, livlymefoundation.org?
Carin: Yeah, and no E in Liv, so L-I-V, Lyme Foundation?
Carin: Very cool. Okay, last question. So here at RawlsMD, we really like to focus on hope. I know that sometimes when you have Lyme, it can be a downer and hard to maintain that hope. So, do you have any thoughts that can provide hope to other people out there who’ve been struggling with some of these things?
Olivia: I just think, “You know what? There’s going to be a great future ahead,” and with the scientists that I’ve met, they are definitely working on finding a cure. I think that the cure will be around in maybe five years. So, you could be looking forward to that, and it’s definitely on the horizon.
Carin: Fantastic. Olivia, thank you so much for chatting with me today. I really appreciate it.
Olivia: Thank you so much for having me here and for being able to talk with me.