Olivia Goodreau and the LivLyme Foundation: Offering Direct Support to Children with Lyme Disease
Olivia Goodreau contracted Lyme disease at age six, and endured more than 18 months of suffering and misdiagnoses. The experience inspired her to do more than spread the word about tick-borne illnesses. At 12, she founded LivLyme to raise money for kids that cannot afford their Lyme medication, and to support research for a cure.
More Information
- Learn more about the LivLyme Foundation
- The TickTracker App
- Apply for Funding for Your Child
- Apply for Research Funding
Explore tick repellent clothing for kids
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Transcript of the Interview
Mark at Insect Shield
Today we're talking to Olivia Goodreau from the LivLyme Foundation. She contracted Lyme disease when she was six. And that's led to a whole series of events and experiences. And at some point, you founded the LivLyme Foundation, and have been working ever since to spread awareness of Lyme and do a whole bunch of work in this area. And so we want to find out about that story a little bit.
You've worked with Insect Shield, you guys are one of our partners. And we want to find out what you're doing today, after you give us some of that background. So welcome, Olivia to the Insect Shield blog.
Olivia Goodreau
Thank you so much. It's an honor to be here.
Mark at Insect Shield
Thanks a lot. So tell us a little bit about your experience from age six. Because this turns out to be something that's very common for people who are bitten by a tick and wind up trying to figure out what these symptoms that they get are from. I think, in your case, you didn't even know that you were bitten.
Olivia Goodreau
Yeah, so I was bitten between the summer of my first and second grade year, and I did not see the tick, and I did not have a bull's eye rash. And then a few weeks later, I started developing symptoms similar to flu, like I started having a tremor in my right hand, I started losing my vision, it was very hard to get out of bed.
And then over the course of 18 months, I saw 51 doctors all from Colorado, who diagnosed me with Wilson's disease, told me that I needed to drink more water because I was in a high altitude state, and then leave. And then they later thought that I was making it up for attention. And so as a now eight year old, it was very hard to hear because I was in so much pain. And for them to think that I was faking everything, when like I couldn't see at all, it just felt really difficult, especially since you had to rely on them a lot.
And then my 51st doctor did more tests and took the time to see what the other doctors had missed. And he did a Lyme test, and it came back positive, and it was one of the most off the charts cases the hospital had ever seen. So they put me on 30 days of doxycycline and said that I will be back to normal. I felt better after those 30 days, but then it started to decline again. And I knew that I needed to find a Lyme doctor or some kind of specialist who really knew what they were doing.
And three years later, with four more doctors, I finally had a 54th doctor who diagnosed me with Bartonella, Babesia (babesiosis), POTS syndrome, relapsing fever, and Alpha-1 antitrypsin deficiency, all from this one tick that we never saw.
And 51 doctors missed everything, and I remember he was looking through my medical records. And at the time, it's like, really tall. It was like it put the Harry Potter series to shame. And he was just going through them all. And it's like, man, they missed this and this and this. And it would have been easy if they had done this test. But they decided against it. And yeah, so that was a very tough time, especially the diagnosis process was very difficult for me.
Mark at Insect Shield
Yeah. And you were so young at the time, too. I mean, it sounds like, it's very fortunate that your parents were great advocates for you in that situation. I know doctors, often we have this kind of old school mentality about doctors, like nothing against doctors, but that they know so much that they can't be wrong. And that's, that's really hard and situations like this. So that experience that you had, I mean, that's something that you share with a lot of people, right. And that kind of inspired you to do more, because why should it take so long to get this diagnosis?
Olivia Goodreau
Yeah, that's exactly what I was thinking. And as I was researching about other stories about Lyme disease, I had come across a story about a mom and her son and they were living in their car so they could afford the boy’s Lyme disease medication. And out of all those stories, that one just really stuck with me.
And then in the spring of 2017, I founded the LivLyme Foundation. The two goals are to give proper funding to scientists and universities, doctors, so they can find potential cures and better treatments for Lyme disease and other tick borne illnesses. And then also to give funding to kids that may need it so that way, they don't have to have their childhood robbed, like I basically did. And hopefully I can prevent another case that was like mine. That's my goal.
Mark at Insect Shield
Well, I mean, obviously, very inspiring. And you have the motivation. I mean, this is like, we're talking to others with Lyme on the blog here. And that is such a common theme, the misdiagnosis. And one of the real risks is like, the longer you go without a proper diagnosis, the more severe or the higher the chance that you'll get those long term symptoms, right? I mean, that's a big deal. So, tell us more about how you got started with LivLyme foundation. And how that grew.
Olivia Goodreau
So I had talked to other people about organizations, and my mom actually helped my old middle school with fundraising a lot. And she was about to retire from that when one day, I just went up to her and I was like, I want to start a nonprofit. And she was like, all right, here we go again. And so I did my research. And I made sure that I had good values. And I made sure, one of the big things was, I was like, if there's a foundation that's already out there, that's doing what I hope to do, I will just help donate to the foundation. But the thing was, I wanted to do these two things, helping kids and also helping scientists and I had found organizations that help scientists and organizations that help kids, and none of them really did both - incorporated it.
And so I thought, Hey, you know, this can be my thing like this can be kind of where I can sneak in and just find a place in that organization world. And also, there's a lot of nonprofits on both coasts. And so I think it's kind of funny that I'm from Colorado, in the middle of the country, and I'm just kind of like the middle ground almost.
And so I was doing my research, and I had just found it. And we had a very small social media page, like, I think we had, like 15 followers at the time, or something like that. And not even 20 minutes after we had pushed out the LivLyme website, someone donated to it, and someone also applied their child to come up for a grant. And so that really put it into perspective on how desperate people are, in the sense that this foundation was literally 20 minutes old, like out in the public 20, maybe 19. And already people are trying to find ways to get their child financing so that they can have a childhood. And that inspired me more.
Mark at Insect Shield
So that aspect. I mean, I don't think I've seen that, like the idea of giving funding to individuals just to help them get through the difficulties. And this is like a financial way of doing that. Say a little bit more about that, like you have a spot on your website where people go, they can apply for their kid to get help.
Olivia Goodreau
Yes, so we have given over 50 grants to kids from all over the US. And we have gotten grant applications over I believe 700 from the US, Canada, Mexico, and Australia. But right now we can only do the US and I really hope to go international at some point.
But yeah, if you go onto our foundation, every year, we had this opening to where you can apply your child for a grant. And we just ask you basic questions to where if you are a parent of that child, you should know all the answers to since one of the big things about our lawyers were talking about and agents we're talking about was we don't want to kind of get scammed in the sense of someone says, Oh, well, my child has Lyme disease, but then there's no proof. We want to actually mean something.
And so that's why we have a very detailed questionnaire and we kind of let the parents tell their story. And some of them are paragraphs long. Others are like two or three pages worth. And so I personally read through all of the grant applications. And it is both the best and worst part about this job is because like I cry the entire time, like I'm just a sobbing mess, and then eventually I have to choose 20 grants for that year. And I, that's the worst part, because I feel like everybody there deserves something, it's just that I'm not big enough yet to give it to them.
And so, at one point, I hope that I can do that for everyone. And the stories have just been incredible. And I also call the parents to announce that they have been given a grant. So I'll call them I'll leave them voicemails and sometimes they think that I'm like a salesperson or a robot, so they'll hang up on me. And so I have to call them again, I'll be like, “Hi, my name is Olivia Goodreau from the LivLyme foundation....” I'll just [say] it so fast. Sometimes I get to talk to the grant recipients, which is always fun for me. And so that's a really fun part about what I do is just connecting with people from all over the country and helping them out.
Mark at Insect Shield
That's awesome. So what are some of the themes? I mean, you know, you're probably getting more stories than a lot of other organizations or news media outlets or anything like that. So what are some of the things that you hear a lot, that are common to these folks?
Olivia Goodreau
So a majority of the time, actually, I hear that their child is not the only one with the tick borne illness. Sometimes the parents also have tick borne illnesses. Sometimes it's the whole family. And so they'll be talking and they'll say, Hey, listen, this child, they have two other siblings that also have Lyme disease, or Bartonella, or Babesia, or some other illness, and they'll say, out of all of my children, this person has it worst. And so I would like to give them the grant.
And that's something that's really difficult, because you have to choose between your kids, which no one should ever have to do that. And I also hear, generally, not many people knew what Lyme disease was, or they knew very little of it before they got bitten. And I think that the lack of awareness does play a big part in all of the new patients. And all the new victims that I've been seeing is just that they were out in the woods, they were on a bike ride, they were hiking, and they didn't know. And so I think that if awareness was more present, I would be seeing less and less of those stories and hopefully less grant applications.
Mark at Insect Shield
Yeah, exactly. Well, I have a sense that you're going to see more than less, but that's a great thing. You know, that that you have going and yeah, the awareness. I mean, obviously, you're doing work in that area. What are the kinds of things that you think would be more beneficial in terms of making people aware?
Olivia Goodreau
I would generally say if there were signs at parks that said, “Hey, beware of ticks.” If you see things that may be at Walgreens, or some kind of local store, that's like tick spray, tick protection, tick, tweezers, things like that. Just general warnings, whether it be on social media, local area, signs, pamphlets, anything like that. And I would hope that in future like national parks would also have the signs to talk about ticks and say, Hey, listen, if you go here, just be careful. Ticks are around the area, and Lyme is not too fun. So I think that those would be very beneficial for awareness. And then also people as well, people talking about it definitely brings a lot more awareness.
Mark at Insect Shield
Right. I mean, Insect Shield, I don't know if I mentioned but I started here in 2020, back in March, right before COVID got rolling. And, you know, one of the things that I see a lot because I am searching the internet all the time and looking for, you know, things that are relevant for our business. And, there are all kinds of media websites, where they interview a specialist or an entomologist or something, and then they kind of have a list of the things that you can do to prevent tick bites.
And they're just kind of, you know, not that robust. I mean, sometimes they don't even mention permethrin as a thing that you can treat your clothes with, which, I mean, I feel like if anything, more awareness and the kinds of things that you can do to prevent the bites, rather than coming in after the fact. The disease itself is so debilitating in many cases. You know, putting the effort there. So I think you guys have kind of a broad view of that. And the fact that you're helping kids is huge. Some of the other things that you do like, the TickTracker, right, is the app that you created yourself. And so let's talk about that a little bit.
Olivia Goodreau
Yeah, sure. So three summers ago, I was in the Lake of the Ozarks in Missouri. And I noticed that there were 200 poppy seed sized ticks on my dog's legs. And so as we're trying to get all the ticks off, I had asked my mom, I was like, Hey, is there a way to where we can see what kind of ticks these are? Just in our area? Like, is there some kind of map or website or app for that?
And it wasn't the best time to ask her because she was freaking out about the ticks. But later, when we got the whole situation figured out, I did ask her, and we did the research. And there wasn't really a reliable source. You had the CDC maps, but those were older. And those didn't exactly show certain neighborhoods or counties or didn't really zoom in on where exactly you were. So I had the idea, well, what if we can see tics in real time using geolocation? And so that's exactly what TickTracker is.
It's a free global app in multiple languages that basically lets you see ticks in real time, using citizen scientists, as well as public and private organizations. The Smithsonian, the CDC, basically, anyone that we can get that's been helping us and so you go on, and there'll be a map, and it'll show you where people have reported ticks. And it's very interesting.
I've talked to people to where they say, there's no ticks around me, no ticks in the state, and then I pull up TickTracker, and I zoom in I like, so look at your neighbor's backyard, like what they posted. And it's been, I think, a very revealing thing for a lot of people realizing thing. And TickTracker has been helping a lot of people. And this is also great for awareness, since we were talking about that earlier. Because TickTracker has notifications that will say, hey, you're going into a place that has been reported of tick sightings or ticks biting. So just be careful. And so I would definitely recommend downloading TickTracker. I think it'll help out a lot of people.
Mark at Insect Shield
Definitely. Yeah, I think I read something the other day where there was, I don't know, an app developer and, you know, sort of collaboration with the scientists, etymologists, to come up with a game type of app. That would be you know, sort of like you're saying, but geared more toward kids where they could learn about ticks. While you know, seeing all this kind of action, or whatever, I think your app has elements of that, kind of like heat map feature, is that something that you're doing?
Olivia Goodreau
Yes, we do have a heat map, this is just generally more helpful for visual people to show that if you're in like a red index, then you are in a place where there are a lot of ticks. And then so the colors kind of it's almost like weather, or you kind of see it, and it's very visual for people. But I think the app that you were talking about earlier. It's called “Tick, tick boom.” And my brothers are actually creating an app to help learn about ticks and tick prevention\. They call it edutainment. It's generally for kids; that's their goal. They've been my biggest supporters and they don't know me not being sick. And so that was the idea or it could be a different app. And maybe we'll have to compare and contrast and exchange notes on that.
Mark at Insect Shield
I'll have to look it up. I don't know that they had actually worked it out, you know how it was supposed to go. But they were saying like, kids can learn. They want to learn, sort of like Pokemon GO or whatever. And all the different kinds of tips are great for people to learn more, because there’s all different kinds, like so many different kinds of ticks and some carry Lyme and others carry different diseases. So that's an area where people can really get better educated as well.
Olivia Goodreau
Sure.
Mark at Insect Shield
So let's see. I've got a couple other things here. What are you guys doing today? I mean, what's your focus these days?
Olivia Goodreau
Our focus has generally been bringing awareness, we are getting ready for our summit, which we will be bringing top scientists, doctors, and other important figures into I believe, since it will be online as it was last year, I'm not sure if it's going to be on zoom, or if they're going to be pre-recorded. But basically, you will be able to see all the scientists present about what they're doing today and how things have changed, and what they've been up to as well.
We do have a few things in the works that we are not allowed to share yet, but I am very excited about them. I do think that they will definitely be a game changer, especially due to recent events. And I hope that they will help a lot of people. I mean, that's generally my goal. And a goal of a lot of other people suffering with Lyme disease is to bring help to others. And so hopefully, when I am allowed to release what we are doing, it'll help.
Mark at Insect Shield
Awesome. Well, Olivia, thank you so much for your time today. We're really glad to get a chance to check in, and we admire what you're doing. You know, we're pretty honored - Insect Shield - to be your partner. And I hope we can do a lot more in the future. So let us know when that big news comes out and we'll get on it.
Olivia Goodreau
Thank you so much.