How a Painful Sun-Related Condition Sparked a Purpose and a Calling | Craig Leppert
Welcome to My Hero 360! In this informative interview, Kerri Fitzgerald talks with Craig Leppert, founder of Shadow Jumpers, who lives with a rare painful sun-related condition called erythropoietic protoporphyria (EPP). The genetic condition is marked by an intense reaction to sunlight and other lights, challenging this Los Angeles-based founder to live purposefully while remaining mindful of sun and light exposure.
Key Highlights:
- Hear how Craig Leppert and his family finally received a diagnosis of erythropoietic protoporphyria and how they handled the news.
- Learn about how Craig and his family came to navigate life with EPP.
- Hear how Craig founded Shadow Jumpers to provide important resources to the photosensitive condition community.
- Be inspired by Craig’s camp for kids with photosensitive conditions that allows them to safely participate in activities like horseback riding, archery, and more.
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Transcript:
Kerri Fitzgerald:
Hello, and welcome to My Hero 360. My name is Kerri, and today we are highlighting the hero story of Craig Leppert. The mission of My Hero 360 is to amplify the voices of remarkable individuals whose stories ignite inspiration and drive positive change. Craig, thank you for joining us today.
Craig Leppert:
Yeah, thanks, Kerri. I’m really happy to be here.
Kerri Fitzgerald:
Thank you. To start, can you introduce yourself and provide a little background so our audience can get to know you?
Craig Leppert:
Yeah, of course. My name’s Craig Leppert. I suffer from erythropoietic protoporphyria. To save you the tongue twister, we just really call it EPP. Essentially, it’s a genetic blood disorder that makes me extremely susceptible to sunlight, or in rare cases, artificial light. Depending on the time of day and the strength of a UV ray outside, 10 to 15 minutes could equal pain in my body that’s equal to a second-degree burn. For some people with our conditions, or in the family of our conditions, even a couple minutes outside can lead to skin cancer. I’ve always kind of gone the unconventional path with my disorder. I was born in Hawaii. I grew up on the Jersey Shore, and I currently live in Los Angeles where I work in the television industry. I’ve never done what I’ve probably supposed to do. Outside of that, I’ve taken my condition and tried to use it for a sense of good. I founded a nonprofit called Shadow Jumpers, which essentially works as kind of like a Make-A-Wish, an assistant program for families in North America suffering from EPP or really any photosensitive condition.
Kerri Fitzgerald:
That’s great, and we’re definitely going to go into Shadow Jumpers more in our conversation. You mentioned EPP, can you describe some of the ways that a condition impacts lifestyle and trying to avoid that UV and also artificial rays that you mentioned?
Craig Leppert:
Yeah, I would pose the question for you, or for our viewers, of take the last week of your life, or a couple days even for that matter, and think of all the moments where you might’ve been in sunlight or direct sunlight. What comes to mind is going to get the mail, driving your car to work, running errands, wanting to see friends for activities, grabbing lunch, even sitting by a window. For you, you just kind of let those things pass by. But for people like myself, and others in our community, you really have to kind of clock those moments and always be aware of where you are, how you’re feeling that day with your skin. It’s kind of just been there for me. It’s always in the back of your mind. We kind of call it a ticking clock. For me, it’s affected, in some fashion, what I have to wear, where I have to go.
I think for me though, being 34 years old, and living with this for my whole life, you start to find ways for those, I hate to say obstacles, but those conditions, and the things you have to do to blend into your normal life. As opposed to maybe wearing the very high-end protective clothing, now you realize if I wear a hoodie with a hat, and kind of move in a certain tree line, I might be able to still have the same day as before. But without a doubt, it does affect for most people where you live, what you do, and what decisions you make, even as far as the relationships you might have with other people.
Kerri Fitzgerald:
Right. Yeah. You mentioned think about what I’ve done in the past few days, and I was just on a plane. Thinking about that situation with the light coming in, how have you handled that scenario?
Craig Leppert:
Yeah, even more so with being on a plane. There’s some people, I was just at an amazing conference last month for people with our disorder, and we took a coach bus, and what you wouldn’t even think is the interior lights on a coach bus really, really hurt some people, and we needed to find a way around that. I think it’s just always having an idea of checking your surroundings, or checking your situation, and not only scoping them out, but having a plan in your head of if things start to go sideways, what am I going to do? Always being prepared. I think people in our community are very adaptable, and are willing to adapt. They’re just not good at being surprised with circumstances. I think it’s just always being prepared, and trying to walk those routes, or block out your day ahead of time before you go and do it.
Kerri Fitzgerald:
Yeah, it seems like a lot more planning and preparing for situations that wouldn’t occur to other people.
Craig Leppert:
If I may, like a lot of people, especially as you get into other porphyrias, plane travel is a huge variable for a lot of people. We’ve had a lot of people that will prefer to drive long distances because they can sunproof that experience in their car as opposed to you don’t know if you’re in aisle 3, aisle 6 could have the window open, and God forbid that hits you in a certain way.
Kerri Fitzgerald:
Wow, that’s so much logistically to think about.
I’ve read some interviews that you, and your family have given, and so you were first showing symptoms pretty young, about 18 months old, but you weren’t diagnosed until you were 5, I believe, just because it’s such a rare condition. What are your memories around your understanding of EPP? How did your parents talk to you about it, and how did your family kind of adapt your lifestyle?
Craig Leppert:
Yeah, the one thing I always say is EPP is such an isolating condition, but the journey with it is so similar across the board. I had symptoms at 18 months, but I was misdiagnosed for years, and that’s a huge problem in our community. It’s just doctor education and updated medical practices and stuff like that. My family, I had symptoms at 18 months; I was in a kiddie pool. My parents were out of town. My grandma had me outside our apartment in a kiddie pool, and I just started scratching, and going nuts, and you can’t really communicate that at that age.
You’re screaming, you’re crying. The next day I woke up, and my hands had looked like little boxing gloves. You didn’t know where my knuckles started, where my wrist started. You go to the doctor, and the doctor has no idea. They thought maybe it was chlorine in a pool even though we were using water from a hose. What started over the next 4 years was just a checklist of things that it wasn’t going to be. It was some doctor thought it was detergent, so we switched to a baby safe detergent. Some doctor thought it was hydrogen in the air. I feel so bad for wherever that guy is practicing medicine today; God help those patients. But really what I knew at that time was, and my parents, it was something outside related, and it was something that was much more severe in the summer compared to the winter.
It was one of those where I think we had a hunch that it was something sun-related, or something heat-related. But for years, just knowing you have to be careful outside, especially as we moved to the summer, and finally when I did get a proper diagnosis when we moved to New Jersey, it was such a relief for my family. I suffer from EPP, but it’s really, EPP is a family disorder. It affects everyone in our home, from parents who can be self-conscious because this is genetic, and it’s passed down from them to their child, even though they don’t have symptoms. Siblings that don’t have this condition really have to sacrifice what they want to do, where they want to go, because a lot of stuff you can’t do with these children.
I know it was a big relief for my family. My mom will always tell the story. When she got the call from the doctor, she went to the library to check on any information she could find. All she found at that time in 1995 was a paragraph in 1 encyclopedia that described it. Like a lot of parents, you feel relieved, but then suddenly there’s an overwhelming rush of, “My son’s life is going to stink. My son’s life is going to be capped on what experiences he can have.” I just remember feeling really relieved as a family that we knew what we had, but then at the same time, feeling the tension of my parents initially being afraid that we might not be able to have the life that we wanted until they decided they were going to put us in every situation we could.
Kerri Fitzgerald:
Yeah, and to that point, you said in a prior interview that your family was determined to go their own way and just make the most of doing whatever you could. You’ve also mentioned that you felt that having EPP made you unique and authentic, which I think for a young kid is a great outlook to have, especially when fitting in can be a theme when you’re growing up. Was that positivity and acceptance for you innate, or did it take some time for you to see your condition as something important that set you apart?
Craig Leppert:
I think like most kids, when you start the process of being around other kids and trying to fit in, every kid, no matter if it’s a sun condition, or something else, I think they want to shy away or hide the things that might make them stick out. I definitely want to acknowledge I was probably that early on, but very quickly I realized that having this condition and having a unique set of circumstances was something no one else was going to have. It was going to make me very memorable in every encounter or every person that I met. I think a lot of that initial thinking came from my parents. My parents were very determined after initially thinking life was going to be so hard that their plan of action was we were going to have exactly the family upbringing and the lifestyle that they always envisioned for us.
That meant we were going to go to vacations in California and go to Disney World in Florida and just figure it out. I think that’s so important for families, but most importantly for kids at a young age, because so much of how you take on your disorder or really your circumstances in life in general I think is from how you handle them at a young age or how you’re perceived to look at them at a young age. Being thrown in all those situations with my parents and having to go on really hot vacations, some vacations where I was like, “I don’t even want to go to Disney World. This is going to be really tough.” I think molded me over time to look at my disorder as a fun way to work around things.
Once I started to feel that way, there was definitely a sense of self-confidence that came from that because you’re kind of winning all these little mini battles every day that no one else is going through. I quickly learned that having EPP was a brand of shirt that no one could buy, or it was being a young kid, a dance, or some hobby that no one could pick up. It was going to be the one thing that everyone would remember me for or it could define me. I think that’s a big discrepancy that we need to bring up is a lot of people make it their lifestyle, but make it define them and have it dictate everything that they do. I think early on, especially now, I really view EPP as this great eccentric topping that is the story of your life. It’s here’s all these great things, and can you believe that this is the kid that was allergic to the sun? I think that’s very powerful, and something that no one else could have.
Kerri Fitzgerald:
Yeah. You mentioned earlier in our conversation that you were at a conference. At what age were you able to meet people who had EPP or other photosensitive conditions, and did that help further just make you appreciate the uniqueness of it as you mentioned?
Craig Leppert:
Yeah, actually, ironically, in-person besides my sister who also has this condition, a year ago was the first time I had ever met anyone else with EPP, I think… Yeah, I thank God due to the internet and social media, my parents, and I were lucky years ago to be featured on Mystery Diagnosis and The Dr. Oz Show. Through that, we’ve met a lot of people online who would reach out us and talk to us. But having just my sister for the longest time growing up, I think in a weird way, it benefited me more now to meet people that have my condition than I did back then, because I think it was just such a great reminder, and it was just a great experience to meet people that are talking the same language as you and all the little buzzwords, and all the little things that you wouldn’t be able to share with other people to finally have not only a 10-year-old’s life history to talk about it, but 33 years in so many different moments and so many different thoughts and ideas.
Yeah, last year I was able to meet people, and I’ve met those people 1 or 2 times, and they’re some of my favorite people, some of my best friends, because you could just bond with those people on such a different level.
Kerri Fitzgerald:
Yeah, absolutely. Let’s talk about Shadow Jumpers, a nonprofit you created that helps other families living with rare photosensitive conditions. Can you talk about the story behind the development of the organization? What’s its mission, and how does the organization work with these families?
Craig Leppert:
Yeah, of course. Like I said, we were fortunate to have a 15 minutes of fame where we were on some major publications. Through that, I’ve met a lot of people online, particularly Facebook, who had EPP and talking to them about their lifestyle. I was pretty blown away at how unique my family’s viewpoint of EPP was from other people. I was kind of disappointed to see a lot of people let our condition dictate their life choices and kind of the life that they were going to live. Instead of trying to debate these people in different forums or chats of what was the right way to go about it, I wanted to put my money where my mouth was. We created Shadow Jumpers as a nonprofit to essentially take all the reasons why you wouldn’t try something out of the equation.
Our mission is to create experiences and a sense of community for families in North America living with photosensitive conditions. Really our biggest buckets are we help families go on sunproof vacations; we renovate or retrofit their homes to be more sunproof. We help them recreate experiences they might’ve tried in the sun, but were unsuccessful. We help them with financial relief on their medical bills, and we help them find high-end UV protective clothing. Really what we do with these families is it’s very open-ended on purpose.
They’ll reach out to us via our website or some other form of communication, and they’ll say, “Hey, I’m looking to do A, B, and C, I have nowhere to turn. I need some help.” Then we’ll work hand in hand, all expenses paid, all costs covered, of not only planning this experience, or doing this for the family, but also trying to educate them on, if you were to do this on your own, here’s the tips and tricks that we would do. We started off doing in 2018 just experiences the Disney World, which got very expensive, very fast. But even in that we would show families, “Hey, this is the park hotel that you should stay at. Here’s how we would map out our day. When walking around the park, here’s the little tips and tricks you would do.” From that, it’s evolved to sending families to horseback ranches to ride horses they’ve always wanted to do. We helped an amazing kid collect seashells by the seashore, say that 3 times fast. Because he’s always wanted to do that on a beach, and so much more.
It’s been really great, because at the time when we started Shadow Jumpers, there are so many great organizations out there in our community that really help families with the diagnosis part of their journey. You don’t know where to turn. You have a diagnosis, much like my family, you think the world is ending, here’s these great places and great people to kind of walk you off the ledge, for lack of a better term. But it kind of felt to me that in that process, once that was done, there was no one else, there was no one to kind of talk to you about living with these day-to-day conditions in more of a lifestyle sense than a medical sense. We started that, and I think the last few years you’ve seen so many of those organizations take on those roles, and objectives also. It’s just been great for our community.
Kerri Fitzgerald:
That’s so great. It’s almost like the journey starts at the diagnosis, right? Because now you have to figure out how to live, and really live purposefully, and without bounds like you’ve mentioned. I think that’s a really incredible service that your organization is providing.
Craig Leppert:
Yeah, I always tell people in our community, there’s now all these amazing treatments and great promise of being able to live with these conditions, and the data is really promising. But I always tell those people, there’s 1 study that’s gone on that’s even more promising, and it’s in the history of EPP, every single person studied, no one has ever felt so bad and depressed about themselves that their body and EPP just went away. There’s nothing that you can do right now that’s going to change your set of circumstances. You should find a way to start living with this condition. That’s hard for people. That’s something we’ve tried to instill both in the kids, and our parents, with EPP, but even more so the parents to those kids as well.
Kerri Fitzgerald:
Yeah, I bet it’s hard for parents, because this is your child, and you want them to have the fullest life, and it’s important that you’re showing that they very much can.
Craig Leppert:
Yeah, absolutely.
Kerri Fitzgerald:
Part of Shadow Jumpers, you’ve also established this Sun Escape Camp Weekend for kids that offers activities set indoors or take place later in the evening, giving them opportunities to do activities that other kids can do, like horseback riding, archery, zip lining, and more. What made you decide to launch the camp?
Craig Leppert:
Yeah, we are so excited about what we call Sun Escape, and we’re moving in starting the process for year 2. We were so successful with 19 families last May, which took place at Victory Junction, an amazing facility in North Carolina. This camp is set up to feel exactly like camp, or a fun weekend, but set purposely indoors or in the late evening. We go out of our way, we put high-end protective cloth over all the exposed windows. We have a shuttle bus that runs around the camp area, so you’re not walking from your cabin to the facility or vice versa. Every child and photosensitive volunteer has a high-end UV umbrella, and the best part is it’s all free. We found a way to cover not only the cost of the camp for families but all their travel. Wherever you’re coming from in North America, we’re going to get you there for free.
Really this idea came to us with our great partners at the United Porphyrias Association, a great medical-based nonprofit in our community, because years ago there was an amazing camp called Camp Sundown that took place in upstate New York, and this was a great mom-and-pop feeling camp that kids of EPP, XLP, and in my understanding, all photosensitive conditions, could come and hang out and bond with other people that had similar circumstances such as them for the first time. This camp was all at night. They slept during the day, and they did fun activities and hung out at night. There was an indoor swimming pool, and for one reason, or another during the heart of COVID, they unfortunately shut their doors, and there was just nowhere else to go. We saw, not a hole per se in the community, but a great outlet that we could use that many people would find useful. We came together pretty quickly. If you’re thinking about putting on a camp yourself, don’t do it in 10 weeks. You’ll not sleep, you won’t do anything.
But we have an amazing partner over at Victory Junction who is a camp set up by the Petty family, the NASCAR Petty family, and they specialize in tinkering and moving around aspects of their camp facility to fit all types of disabilities and hardships for kids every year. They’ve been amazing partners. I think we’re really excited for this year we’re going from 20 families to 32 families, and from 36 volunteers to about 40-something volunteers. The best part about our volunteers is they also have to have one of these conditions or be personally related to someone that does such as a spouse or a sibling or a parent. The whole weekend is just you’re surrounded by people that walk the way you walk, talk the way you talk, and understand things that only you would. My favorite aspect of that. We also mark for families all the interior lighting in every camp facility. Some of these conditions, even more so than EPP, are very, very sensitive to all kinds of light.
My favorite moment was the second day of camp we’re in this super dome, which is just a tricked-out crazy baseball field inside, and the lights in there are a little intense. All the kids came together, and said, “We need to turn off these lights.” We had a countdown from 15, and just the enthusiasm, and just the pride of embracing your circumstance was emotional and just something I’ll never forget. We’re really looking forward to this. We’re going to have a water park set up, they have a water park there that was being renovated when we were there last year. We’re going to start the process of looking how to sun-proof that and how to do it. It’s just great. Whether it’s a camp or all the other great activities at Shadow Jumpers, we’re just trying to do things that we wish we had when we were a teenager, when we were a kid, and to be that unique voice for those people to latch onto. I know it’s a lot of information, but it’s super awesome. We can’t wait.
Kerri Fitzgerald:
It sounds incredible, and I’m sure it’s really well-received by the campers. What can you tell us any kind of reaction or feedback from the families who went last year?
Craig Leppert:
Yes, we did do a survey, and the 19 families all said that they would return. In that survey, the biggest thing for us was families kept saying it was so nice for someone to think of these things, so we didn’t have to. It was back to what we said earlier of everywhere you go you have to clock and think about these things. I think there was just such relief to be able to go somewhere, and have someone that is like you think for you and to take that burden off of your hands. I know that what we did Saturday of camp is we broke off into 2 groups. Our kids all stayed together, and our parents stayed together. We have an amazing medical professional by the name of Dr. Amy Dickey, who also has EPP, and for about an hour was able to answer questions for families, and parents were able to bond for each other.
Just like for these kids that have never met someone else with a condition, these parents have never met anyone else either. The response was just so positive of just being able to think for them, being able to talk to other people, and just how much fun it was to do the things they’ve always wanted to do, like ride a horse, and shoot archery, and zip line, and not have to wear covered up protective garments, not have to worry about the sun and to really lean into the experience. It was awesome. Our volunteers complained that they wanted to zip line and horseback ride, and I was like, “Oh, my God, it is not for you, but I wish we could.” Everyone wanted in on the activities.
Kerri Fitzgerald:
It’s so important to have that community, like you said, that really can understand firsthand what you’re going through. That’s just wonderful.
My Hero 360 is all about recognizing people who have embraced life’s challenges and turned it into something powerful and hopeful for others, which I think you certainly do, particularly with your organization and your camp. What words of wisdom would you share with a young kid or the parents of a child with these photosensitive conditions?
Craig Leppert:
I would say for kids with these conditions, like I said before, is you can either let these things define you, or you can… There’s power in your disorder, and you can let that power overwhelm you, and dictate you, or you can harvest that power, and really make a name for yourself and really stick out. I live in Los Angeles where the more unique, and weird you are is like currency out here. A dinner party is like a one-up of who’s having a weirder life.
Also kids in general, if you feel like you’re being looked at a certain way, or treated a certain way, people and kids will treat you the way that you treat yourself and you treat your disorder. Make your disorder as much your best friend as you can, and everything else is going to fall into place.
I think with parents, what I would say is, as hard as it is, your child is going to treat their disorder the way that you treat it for them. As hard as it is, you have to let them go out and have trials and tribulations. You have to let them learn on their own, and you have to let them kind of experience their disorder for themselves. I think that kind of sums up, I’m not a parent yet, but I think that would sum up just nurturing your kid in general as hands-off you can and just as supportive as you can as they try to push their limits.
Kerri Fitzgerald:
Yeah, absolutely. We like to conclude My Hero interviews by asking, what would you tell your younger self, knowing what you know now?
Craig Leppert:
If I could tell my younger self what I know now, I would say when you’re up late at night with a reaction, and you’re all by yourself and you’re kind of in the late hours of the night, and you’re like, “Is this worth it? Should I keep going? Should I still push myself?” That you’re doing all the right things, that you’re going in the right direction, and you should be really proud of where you’re going, because you’re going to help impact a lot of people. That’s not something everyone can say.
Kerri Fitzgerald:
That’s certainly true of what you’ve done. I think it’s very apparent that you’re impacting so many people. That’s just incredible. Thank you for sharing your experience, Craig. We know your story will really resonate with listeners, so thank you for partnering with us to tell this story.
Craig Leppert:
Yeah, thanks for having me.
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Connect with Craig Leppert:
- Website: https://www.shadowjumpers.org/
- Instagram: https://www.instagram.com/shadowjumpers_
- Facebook: https://www.facebook.com/ShadowJumpersINC
- LinkedIn: https://www.linkedin.com/company/shadow-jumpers/
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