Noble Blood - Children of the Moon [from Very Special Episodes]

Episode Date: August 16, 2026

Emma has never felt the sun on her skin. Born with a rare condition that makes UV light dangerous, she lives by sunscreen, meters, and moonlight. But she’s also part of a community finding extraordinary ways to make ordinary childhood possible. And thanks to new research, the future may actually be bright. Listen to Dana Schwartz on Very Special Episodes wherever you get your podcasts. See omnystudio.com/listener for privacy information.

This is an I-Heart podcast. Guaranteed Human. Hey, it's Nora Jones, and my podcast Playing Along is back with more of my favorite musicians. Check out my newest episode with Phineas. So I went home and I asked Billy if she wanted to sing it. She immediately made it her own thing. You really know how to make me cry

when you give me those ocean eyes. And I'm scared. So come hang out with us in the studio and listen to Playing Along on the IHeart Radio app, Apple Podcasts, or wherever you get your podcasts. I'm Emily Oster. I'm an economist and data expert. And I'm Perry Wilson. I'm a medical doctor. And this is our new podcast, Wellness Actually. You're getting a staggering amount of health and wellness information, and some of it is awesome.

And some of it is, well, actually, bullshit. Fortunately, we're both people who know how to read studies and can tell you what's worth trying out and what you can safely ignore. Listen to Wellness Actually on the Iheart radio app, Apple Podcasts, or wherever you get your podcasts. On Big Lives, we take a single cultural icon. People like Jane Fonda, George Michael, Little Richard. And we pull apart the story behind the image. Discovering forgotten interviews that change exactly how we see these giants of our culture.

We're here for the messy, the brilliant, the human version of our heroes. I'm Emmanuel Jochi. I'm Kai Wright. And this is Big Lives. Listen to Big Lives on the Iheart Radio app, Apple Podcasts, or wherever you get your podcasts. At concerts, we dance to the same tune. At games, we hug total strangers. And yet, in these moments, there's also something we don't do.

We don't act based on how they look, who they love, where they're from, or what they believe. We just act. Because the things that make us different will never change what makes us. Human. Go to Love Hasnobles.com to learn more. Brought to you by Love Has No Labels and the Act Council. A secret society, a suspicious death, an elite New England graduate school, and a professor and student who come together to study an illicit form of magic and wind up in a dangerous romance.

The Arcane Arts by SD Coverley, the electrifying debut novel that is Leaving Reader's Breathless, available at bookstores everywhere. Every day just before school, 11-year-old Emma Sweet follows a very specific routine. So, like, I wake up, brush my teeth, put on clothes, but I have to, like, put on sunscreen. And then when I have to go outside to get into the school,

I have to put on gloves, a jacket, and a hat. That's Emma. The protocol she's describing is to protect her from the sun. But it's not the same kind of protection you or I might want or need. But sometimes after two layers. Layers of clothing so that no square centimeter of skin is exposed, especially her head. Emma's hat, really more of a helmet, has a clear plastic sheet that covers her entire face. It's a site that can sometimes provoke reactions from strangers.

But I will say it's really difficult because the conversation always starts with, look at the cute little astronaut, look at the cute little beekeeper. That's Emma's mom, Joanna. And what those people don't understand is that Emma has a very rare condition, one affecting less than 300 people in the entire country and fewer than 2,000 worldwide. It's called zero derma pigmentosum, or XP, and it means that Emma will never, ever be able to get any sun exposure. Since being diagnosed, she's never felt the sun on her skin, never run out to recess unencumbered by piles of clothing. Even as little as one single second of ultraviolet light can be super dangerous.

So I usually explain it, like, I say, you know how some people are, like, allergic to peanut butter or food allergies, for example? Well, I'm allergic to the sun. And then I explained that it's in my DNA and it, like, I don't know. An allergy to the sun, it sounds impossible. But for Emma, it's her reality. A life, those with XP and their families navigate extremely carefully, sometimes not even going out during the day at all, one where windows and even light bulbs can have life-altering consequences. Despite this formidable challenge, Emma and others like her are finding ways to move with grace, jumping from one shadow to another and finding comfort, even purpose in the darkness. Welcome to very special episodes, an IHeart original podcast.

I'm your host, Dana Schwartz, and this is Children of the Moon. Welcome back to very special episodes. So glad you've made our show part of your podcast listening routine. I'm usually joined here by Dana Schwartz and Sarah and Burnett. Today was a bit of a whirlwind, so I'm going to keep this short and solo. It's a very special, very special episode today. You're going to meet some wonderful, voices who are all very gracious with their time. Real quick here, last week I asked at the top

for a little brainstorming help. We're working on topics for the second half of 2026 and beyond. I asked you to email us your all-time favorite, very special episode. And many of you did. We got a lot of good feedback all over the map, no consensus, which is great. Love seeing that. They're all my favorites. We also got some good questions in there, too, which will squirrel away for a future mailbag. But those email lines are still open. Very special episodes at gmail.com. Check in.

That's enough for me. Let's get this back to Dana. The sun. We're trained to worship it. We hear about the health benefits of vitamin D. We admire the bronzed skin of an outdoors enthusiast.

Sun's out, guns out. The sun will come out tomorrow. You can bet your bottom dollar. But for some, the sun isn't a symbol of wellness. It's the exact opposite, which begins with an upsetting episode of crying and panic. That's how most parents first find out about XP. For some families, the first sign is a severe, blistering sunburn after only minutes outside. One parent described it as happening so quickly.

It's like time-lapse photography. First, a little dot, then a wound, then a raging blister, all within minutes, then a rush to a pediatrician who might suspect food or detergent allergies before consulting an old medical textbook and finding out about XP. Dust off some ancient textbooks, and you'll find case studies as far back as the 1800s, where doctors described patients with skin as delicate as parchment. paper. Even today, doctors can easily be puzzled. So we go to this dermatologist and the physician assistant said something's wrong with her skin. That's not normal. We were like, yeah, no, no, it's okay.

Like, they said it was eczema. That's Joanna again. Emma was just two years old and living in Virginia when she had enough sun exposure to damage her skin, causing a peculiar series of freckles. After many tests and many referrals, they finally got an answer. It wasn't eczema. They called me on the drive, headed over to Roanoke. She was with her dad. And then they asked me to pull over on the side of the road, which I did. And then they shared with me that she had this rare disease and that we needed to get her in a room and close the blinds.

A chronic condition usually comes with more practical advice. Eat less sugar. Take this drug. But life for people with XP gets turned upside down in an instant. Their bodies can't repair the damage to the DNA caused by sunlight the way most people can. The cellular reinforcements that normally arrive and fix us never show up. Without repair, the likelihood of developing malignancies goes up drastically. Children like Emma are 10,000 times more likely to grapple with skin.

skin cancers, mostly on the face and neck, than someone of average risk. While many photosensitive conditions can lead to complications, those with XP are generally at the highest risk for problems. But those details would come later. At the time of Emma's diagnosis, all Joanna really knew was that the sun had to be snuffed out completely. And so we did, and I took family medically if I couldn't work. We couldn't, I didn't even know how to go to the grocery store. So it was a really difficult time. We put carpets in, or I put carpets in the windows.

And it was like an immediate life or die type situation. This would be a lot for any parent to take in. We tend to think of kids as naturally vulnerable, having one that can't go outside without some premeditation is unfathomable for many. For Joanna, it meant getting an education for herself. With XP so rare, it's not as though you can have a conversation with a pediatrician. Joanna had to learn on the go, literally. And trying to figure out how to live, because she wouldn't wear her stuff.

Like, in order for me to take her anywhere, I looked like I was kidnapping her because she would try to take her stuff off. And I'd have to throw a blanket over her, pick her up, and get her up. back in the car. Actually, I had to even purchase a new vehicle because trying to put, so imagine a car, you open the back door to put her in the car seat, you know, the five-point harness with a kid. Emma has XP, part of a spectrum of the disease. About a quarter of XP cases can result in severe neurological problems with neurons suffering oxidative damage that cannot be repaired. Hearing loss or vision

problems are not uncommon. XPC is not as closely associated with these complications, but Emma still has to be mindful. With any version of XP, once a child is diagnosed, their time under the sun is effectively over. Damage occurs so quickly that virtually no amount of ultraviolet light is safe. I don't think people truly understand in the beginning it takes a while to educate. that we're talking zero EV exposure. Like even a second, you know, today and a second tomorrow,

they all add up and it's cumulative damage. And it's permanent. That's why Emma's home is equipped with window tint. When she needs to go out, Emma has a routine of sunscreen, layers, gloves, and a hat before making the trek from her home to the car. the better to protect her dry, sensitive skin. Special eye drops are used to alleviate one of the other effects of XP. People just assume that XP is a skin disease, but it's much more than that.

So her eyes would burn. Like she would just start screaming and crying. My eyes are burning. My eyes feel like they're burning. And so we tried all the eye drops in the world. And then nothing worked except for serum eye drops, which is made out of your blood. The car's windows are tinted to make sure Emma isn't exposed to UV while riding. But driving presents another problem. And I thought, if we get in a car accident or if we get pulled over by a police officer, what am I going to do?

I can't roll down the window. The next thing I know, they're probably going to be dragging me out of the car, you know. And so I went on Etsy and had them create a sticker for me that's on the back of the car that says, you know, child with special needs, XP, look and glove box. Arriving at school, Emma joins her fifth grade class. In acknowledgement of Emma's condition, the district has put protective film on all the windows of the building. Peers understand for the most part. Yeah, so like when I was in second grade, I kind of like got a lot of bullies who are in

fifth grade. And my brother's friends actually found out. and told the principal or the counselor, school counselor. So he's very nice and helpful. But they kept calling me, like, astronaut, beekeeper, like sunkeeper, like she said. Just a lot of not good names. School is a kind of controlled setting. When Emma ventures elsewhere, Joanna needs to keep constant watch of UV levels. she uses a light meter, assessing when it's safe for Emma to peel off her protective attire.

So we carry the UV light meter everywhere we go. The meter should ideally read zero nanometers. I would not let her outside if it was anything above a zero. Now it's a five. So I budged a little teeny bit. So that allows her during the golden hour. So when the sun is gone, right before the sun goes down, it might be like a, 10 or a 5 for 5 minutes.

The meter is one of the few things for XP. Joanna can buy off the shelf or on Amazon. The protective hat, with its built-in fan, is custom-made. There are no medical equipment places that routinely sell XP-friendly attire. It's a nightmare. It's a process. Yeah. So I have to make them myself.

I don't like doing it, and I don't like sewing. I'm not very good at it. First, you have to find a hat that isn't meter, or you have to find multiple hats that you can put together. But when things line up at night, the meter at or close to zero, Emma can peel off those layers and feel the cool air on her bare skin. Yes, I love being out at night. I really want to, like, stay outside. Sometimes I go out in my backyard and just, like, go barefoot with, like, short sleeve and short. pants. So I feel most comfortable like at the lake sometimes. Like I just like float

like on my back and just like look at the stars and just like feel comfort and it's nice since I don't have to wear any of my stuff. It's hard to separate Emma's story from Joanna's. It's been said that XP isn't a singular diagnosis. Instead it's a diagnosis given to the entire family. That's because everyone has to be aware of the pitfalls of sun exposure and how routines need to be modified to accommodate that. And parents have to endure the feeling of

wondering how to best care for them. There's no manual for XP, no guidebook for how to give a child an enriching life while respecting their body's hyper-reactive response to sunlight. And I'm always amazed that I get emotional a day or two after I give the talk because I'm reminded like, I do not live a normal life, you know, but you forget because it's our new normal, right? XP is a lifelong disease. It never spontaneously resolves. Other non-skin cancers can arise like ovarian or thyroid cancer. There can be early onset menopause. And having, XP doesn't absolve you of any other health problems. Last fall, Joanna and Emma received some upsetting news. So we were trying to be very proactive and did an annual MRI, and they found that she actually has six brain tumors,

that she was diagnosed with last fall. I took time off of work again. We went to Boston Children's Hospital. Nobody can explain it. They thought she had a second rare disease called NF1, but she doesn't. So they don't really know what to do with it. They just said, let's just see if they're growing. And so we do a brain MRI often.

And they aren't growing. So we're just not going to worry about them. XP can mean a life of extreme routine coupled with uncertainty. Because Emma's condition was caught at an early age, she's doing all the right things. But what sort of future might await Emma and others like her? I'm Ruby Carr, the host of the podcast, OnCore. Check out our brand new episodes featuring music from the show that everyone is reheating as we speak. Heated rivalry.

Join me as I go behind the songs that brought Shane and Elia together. I'll tell you the stories of Fice, My Moon, My Man, Wolf forades, I'll Believe in Anything, and tattoos all the things she said, and how they all became a part of this global phenomenon. Stream encore on IHeart Radio, Crave, or wherever you get your podcasts. I'm Hoda Kotmi, host of the podcast, Joy 101 with you. Hoda Kotbe. If you know me, you know, I'm always searching for inspiration and useful tools to maximize joy. So this podcast lets us uncover those things together through meaningful conversations with fascinating people. Like when my friend Henry Winkler offered advice to aspiring actors

and really anybody hoping to stand out. You're not hired just to fill time and space. You're hired to fill the space with you. You have something. your guts, you go with it. And Sean Johnson recalled the moment she realized her now husband, Andrew, was the one. He was just so unapologetically himself and knew nothing of Hollywood. He hadn't been on a plane before without his family. It was so pure. Listen to Joy 101 with Hoda Kotby on the IHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

Imagine walking into a room for the very first time. You might notice pictures or maybe a carpet that needs vacuuming. But Amy Townley is looking for other things. One, other windows. I mean, the next thing I do is light bulbs. That's Amy. What kind of light bulbs are they using? Third is for windows, light bulbs.

The third is just like, just the overall environment, basically. Like, I almost feel like my eyes work. I've trained my eyes to work. the same as almost a light meter, just because I have metered everything my whole life. And now I can look at something like, oh, that's probably, you know, on the meter a 12 or 15. And usually I'm within three or four points, I guess you could say. When I, you know, I just like guesstimate off of my eyes and then I actually, you know, meter. Amy is 24 years old, earned her Bachelor of Science in Biological Sciences at Grand Canyon University and is currently a mom living in Arizona.

Like Emma, she has XP. All the precautions that Emma's mother takes from window tint to layers of clothing, that's on Amy to do herself. But just avoiding the sun isn't enough. Fluorescent lighting is a big concern. Even some light. bulbs give off UV light, enough to cause skin damage if Amy isn't careful. So whenever I'm in a new environment, I always check the light bulbs or like the lights in the room, because some light bulbs do put out UV. It's not just lamps. Think about the light sources you encounter in everyday life. The tiny lights attached to surgical instruments. The flickering vending machine at a pizza parlor,

the oncoming beams of passing cars at night. When I go to the dentist, they can't use the light at the dentist. Or like the, when I got braces, the curing light for braces. So there's a lot of things that, you know, you do have to take precautions for, but a lot of the time the media really bends them to make it, I guess, worse. Ah, the media. Present company excluded, of course. Hollywood has taken a crack at XP a few times.

In the 2001 horror film, The Others, Nicole Kidman's two children are forced to remain indoors due to a photosensitive condition. In the 1988 film The Dark Side of the Sun, a young Brad Pitt plays Rick, a teen afflicted with an XP-like condition. Fond of riding motorcycles, Rick uses his health. helmet and leathers to shield himself from the sun. The movie is obscure, released years after Pitt actually became famous. A more recent example is Midnight Sun, a 2018 movie starring Bella Thorne. Bella's character finds XP to be an obstacle in her love life. She's a kind of vampire pastiche, only daring to come out at night and wondering if she'll ever be able to fully commit.

to Charlie, played by Patrick Schwarzenegger. These movies tend to treat XP as a romantic tragedy, something to separate lovers from happiness. For actual XP patients, they're frustrating and only contribute to a societal view of XP as fodder for young adult melodrama. And then, you know, I'm walking down the street the next week and someone comes up to me like, oh, do you have that condition that the girl in that movie has? And I'm like, yes, but, you know, I'm not going to die because I'm out in the sun for two seconds. First of all, I'm going to protect myself.

But, like, it's just wild how they portray XP in, you know, TV shows and movies. Fortunately, Midnight Sun was no twilight. So stereotypes about XP may not be too widespread. It's too rare a condition, and it's that rarity that creates a real problem for those living with it. When Amy played soccer in middle school, she was able to wear ice packs under her layers of clothing to keep from getting heat exhaustion. But sometimes those layers can prove concerning. Because a lot of the time, because I'm wearing so many layers to protect my skin, I get extremely hot. and in some cases I have passed out because of the extreme heat that XP patients endure because of having to protect ourselves.

The danger hasn't disappeared. Even though she was diagnosed as a baby, the sun exposure she did get has long-term consequences. Since I was diagnosed at 18 months old, I've had 37 skin cancers removed majority from my face. The way that it was explained to me is that a lot of the time, cancers that will pop up now on my skin are consequences of when I was exposed before I was diagnosed, which, I mean, I'm almost 24 now, so that seems pretty crazy. But some cells take a really long time to grow and populate, and then they just pop up. And then once they're there, they just grow and grow and grow. Some XP patients can have hundreds of procedures to keep lesions from spreading. There is an upside to this, though.

With vigilance and preventative care, XP patients are living longer, better lives. It's just a different kind of life. Take dating, for example. Growing up, Amy found herself trying to explain her condition to potential partners. Some understood. Others didn't. I didn't actually date till college just because, I mean, obviously I was interested in boys in high school, but, you know, no high school boy is going to want to go out with the girl that can't go to the football game or go sit at the baseball game or go, you know, I don't know, the activities you do when you're in high school

on dates outside and all those things. Then a few years ago, Amy met her future husband. She told him about her photo sensitivity. He didn't say anything originally, like when I put my hat on or anything. I was like, hey, I just want to tell you, by the way, you know, I've read Shank Disorder, can't be exposed to sunlight. And he's like, okay, cool. And then just kept eating.

Like, it wasn't even that much of an issue, which partially made me like him even more because he really didn't care. solid guy. They married and settled in Arizona. You might be thinking, why Arizona of all places? Why doesn't everyone with XP just move to, say, Seattle? A lot of the time, it's like I'm going from inside my air-condition apartment to my air-condition car and to an air-condition building. So it's like I'm just making small hops in between everywhere. So people, I always get the question like, why would you choose Arizona? Because of the sun. And mostly my reaction is the sun is literally everywhere. It does not matter where I go.

It's just, you know, you can't get away from the sun by choosing a different state. But as with many adults who have what some perceive as a disability, Amy sometimes finds that others prefer to make decisions for her, that they believe they know what's best for her. Or I'm not going to invite her to this Fourth of July party I'm having, or I'm not going to invite them to this Easter brunch, you know, whatever the event is. Just because I can't go outside, like, I can go outside. I just have to wear my protective hood and, you know, protect my skin.

And a lot of people just make that decision for me, which is extremely, aggravating because there are a lot of things that, you know, I would love to come to your Fourth of July barbecue, whatever. It's just sometimes I might have to step inside to cool off or I have to wear my hood. And that, you know, that's a decision for me to make. It's not a decision for you to make. Stories like Amy's aren't unusual anymore. Not long ago, researchers doubted many patients would live to see their 30s. With early diagnosis and diligence, many XP patients have a good outlook. What we have shown recently,

and we're just about to publicly present the results on this, is that if patients are really well protected from UV from an early as age as possible and diagnose as early as possible, and if the skin cancers are treated well and they're treated early so they don't have a chance to spread, then what we have in our group is that the life expectancy seems to have. gone up not far from the rest of the general population. That's Dr. Robert Sarkini.

He's the former head and now a senior consultant at the photodermatology unit at Guys in St. Thomas's Hospital in London. When patients visit the facility for treatment and guidance, they see dermatologists. They also see psychologists. And so do their families. But the key is adhering to protocols. the light meters, the layers. It's life-saving,

but not everyone is as diligent as Joanna, Emma, and Amy. Our psychology team essentially explored what were the things that were stopping people from protecting because we started off by recording over a prolonged period of several weeks with as many of our patients as we could, exactly how much and when the ultra-violetion. it was reaching the skin on the face. It was a difficult project to do, but it was really worthwhile. And what we found was that about two-thirds, 65% of the patients were already protecting really well.

And there were one third who were not protecting well at all. And that was the third who clearly were going to do really badly in terms of early skin cancers, early death and all of that. And when we explored what the barriers were, what was stopping them from protecting quite often it was beliefs they had about the condition or feelings about stigmatization. Why wouldn't someone take XP seriously? Teens with the condition can still go through a rebellious phase, where parents might not be heated. It can even happen sooner.

Of her mother's light metering, Emma has an opinion about that. Emma thinks that I am, I need to chill in her own words. You need to. But the problem is that you can't because even two seconds in the sun causes permanent damage. And so, yes, I agree that there has to be a balance. When it comes to any type of exposure, I will always be rigid with that. It's something Dr. Sarkini has seen often. There's really no such thing as being overprotective when sun exposure can be fatal.

But XP or not, kids will always have an independent streak. You know, exert their independence from their parents. And that's particularly likely to be the case in our experience with children whose parents are very worried about them for very good reason that their child has an illness and that they need this UV protection. And that can create really, it can create difficult and stressful dynamics inside families and inside relationships between teenagers. who have the disease and their parents who are trying to protect them and teenagers who want to do their own thing and show they're not going to be told what to do. So it's complicated.

Others can swing the other way, choosing a nocturnal life, assuming total avoidance is safest. But in a study, Dr. Sarkini found that philosophy wasn't necessarily an advantage. Adults protected not nearly as well when they were outside, but spent much, much more time inside on average. The children protected very well when they were outside and they were outside a lot. And when you average it out, going outside a lot but being well protected ended up with the same amount of UV.

With just a few hundred cases, there's not much research being actively conducted into a cure. Management becomes the priority. But there is some encouraging news. Is it possible that Emma, Amy, or poor Bella Thorne could ever conceivably venture outside during the day, uncovered and unconcerned? I'm Ruby Carr, the host of the podcast, Encore. Check out our brand new episodes featuring music from the show that everyone is reheating as we speak. Heated rivalry. Join me as I go behind the songs that brought Shane and Elia together. I'll tell you the stories of Fice, My Moon, My Man, Wolf Forades, I'll Believe in Anything,

and tattoos all the things she said, and how they all became a part of this global phenomenon. Stream encore on IHeart Radio, Crave, or wherever you get your podcasts. I'm Hoda Kottebe, host of the podcast, Joy 101 with Hoda Kotby. If you know me, you know, I'm always searching for inspiration and useful tools to maximize joy.

So this podcast lets us uncover those things together through meaningful conversations with fascinating, people. Like when my friend Henry Winkler offered advice to aspiring actors and really anybody hoping to stand out. You're not hired just to fill time and space. You're hired to fill the space with you. You have something in your guts. You go with it. And Sean Johnson recalled the moment she realized her now husband, Andrew, was the one. He was just so unapologetically himself and knew nothing of Hollywood. He hadn't been on a plane before without his family. family, it was so pure. Listen to Joy 101 with Hoda Kotby on the I Heart Radio app, Apple Podcasts, or wherever you get your podcasts.

Yes, usually on a very sunny, high UV day, in as little as five minutes, you could start to feel a reaction coming on. And usually that, for me now over time, that tells me I have about five minutes to get, you know, somewhere safe. That's Craig Leopard. Whether that's inside or underneath something shaded or else I would have a full-blown reaction. If you ask a lot of people with EPP or other photosensitive conditions, you'd be pretty taken back by how violent they would describe the feeling and the reaction itself. I often think of my reaction as if you were to accidentally put your hand on a stove and burn that, you know, that burning sensation. Craig doesn't have XP. he has erythropoetic proto-porferia, or EPP.

It's another photosensitive condition that makes sun exposure incredibly painful because of an enzyme deficiency. Yeah, the easiest way to cut through all the noise, I usually just say I'm allergic to the sun. You know, you don't get a lot of follow-up questions after that. But if you wanted the real medical sense, you know, people with my condition with EPP, which is erythropoetic protoporferia. I always joke you say that three times fast. You know, the furniture in your house starts moving. But with EPP, you know, we have a malfunction in the enzyme that converts light-sensitive

molecules called protoporferins into heem. And as a result of that, these molecules accumulate over time within the body. And when those molecules are exposed to sunlight through the skin, toxic photochemical reaction occurs. So as you can see, it's much easier to just say you're allergic to the sun and hope no one asks follow-up questions. EPP doesn't have the kind of long-term DNA damage that precipitates skin cancers, but it can damage blood leading to organ issues. Like the others, Craig has to take precautions. Now 35, his life has been one of sun avoidance, not only to prevent complications, but to prevent the sheer physical pain.

Growing up, Craig experienced the same kind of feeling of otherness that can accompany these genetic conditions. I wore, you know, growing up, I wore long sleeves, you know, basically all year-round pants, a hoodie or a hat, had gloves at my disposal. I never went out for recess on a sunny day. You know, I did two lunches, which probably wasn't great in the fourth grade, you know, double lunch. I never went out for a fire drill. Obviously, I knew what to do in the case of a fire,

but, you know, just kind of sat at my desk for the five minutes that everyone went out and back in. Craig's sister Nicole was also diagnosed with EPP. Because it's genetically inherited, there's always that chance. And I think my parents were, my parents are amazing people. You know, they're really the backbone of, and the philosophy that they instilled in us of why I started this organization called Shadow Jumpers that helps these families. My parents met every moment as a family that we were going to do this and we were going to do it the way we wanted and we're not going to feel sorry for ourselves that now two kids have a one in a million rare condition. Shadow Jumpers is Craig's support group for patients and their families. Their son escape program, a travel destination getaway,

is an opportunity for kids to have fun with their peers. It wasn't the first. Back in 1996, parents Dan and Karen Mahar started Camp Sundown in New York. Their camp catered to XP families and as a way of lessening the feeling of isolation for their daughter, Katie, who was diagnosed at age two. While few in number, these types of groups are the bedrock of the XP community, which can find itself underserved by medical professionals. Every year, sometimes twice a year, A dozen or more kids with photosensitive conditions arrive at Sun Escape. It's a sleepaway camp with all the typical activities you'd find in a regular summer gathering. You know, all of our activities are set to feel like camp or a really, you know, really fun weekend with activities like archery, zip lining, a pool, horseback riding, you know, a petting zoo.

We have, you know, parties on the lawn, cabins, all this stuff that, you know, you would close your eyes and picture. that's camp, but done in a sunsafe way with UV protective coverings on all the exposed windows, activities set at night with safe exterior lighting to, you know, like the field, like the pool. We have a UV bus, you know, a bus with all the windows covered to help campers get to certain parts of the facilities. It was at one of these camps where Emma Sweet met a close friend with XP. Here's Emma. Her name is Olivia. and she's super nice.

She is the same XPC as me. And it's been really good. We text on Messenger. And, yeah, we go to, like, Sun Escape with each other, like, the camp in May. And, yeah, we do, like, the talent show together and everything, and it's super fun. At its best, it's also a way for those with these conditions to not be defined completely by their son intolerance. Like, you know, nothing is going to change what you have,

so you should make do with what you got, you know, and I think that's really what we try to instill in people. Not saying it's easy, you know, even, you know, some of these other conditions are hard. You know, CEP is hard. XP is hard. But this is the only life you got. Nothing's going to change that.

So lean in because being sad, nothing's going to come out from using that energy towards being sad. So we got to put it, we try to funnel. our energy into something that, man, at least it's going to make tomorrow better, you know, maybe. But for many patients and their families, it can be hard advice to follow. The sun is a formidable threat, one in which shielding and shunning is practical advice. As we mentioned, XP, EPP, and other similar afflictions are exceedingly rare. And rare isn't a word that often appears in the drug company playbook. But just over a year ago, Craig heard about a clinical trial. It was for a drug

called Bidopartin. It assists the body in reducing the sun sensitivity found in those with EPP. Craig had enrolled in EPP drug trials before and wasn't going to get his hopes up. When there's clinical trials and people need research and surveys and stuff, it's a small net of people to go to. So I've been in clinical trials for a variety of drugs since 2009. Within our community, I was affectionately known as the placebo man. I did six clinical trials. I got the placebo every time. But this time was different. After taking the placebo, he was permitted to receive the actual drug. After being on it for a few weeks, he did something he had never done before. He ventured outside. No hat, no long sleeves, nothing between his skin and the sun. I've actually been on the

Bito-Purton drug, the real thing for about a year, and it's just been such a game changer for me. For the first time since his diagnosis at the age of five, Craig felt the warmth of the sun against his arms and face. He stayed out for hours. He got a sunburn. I would say it used to be very, very dreadful. Like, even if you were freezing and you walked into the sun, you'd be like, ah. Now, I get it a little bit. I get why people look forward to spring, winter into spring and spring in the summer. It's a very warm and, you know, euphoric feeling, even 1%.

Yeah, it's just, it's been such a slow, you know, again, no pun intended, slow burn of really learning to embrace and kind of getting rid of the PTSD of so many tough moments. with the sun. The drug, while still in clinical trials, is promising. The manufacturer, disc medicine, was turned down by the FDA for accelerated approval, but is hoping to garner traditional approval in the near future. It also points to a more hopeful idea. Because some of these conditions correlate so strongly with skin cancer, there's overlap between cancer-fighting drugs and these ultra-rare genetic abnormalities. Here's Dr. Sarkini again.

This DNA repair process, which does not work properly in children with XP, is a pretty fundamental and important protection that all of us have against cancer. And it's a sort of anti-cancer protection system. So that anything that's discovered in XP is likely to be useful more widely for people with, common cancers, with various common cancers. There is a dramatic sort of change happening in the treatment of genetic diseases as well. So EPP, I've been involved with treating patients with EPP for 35 years, and there really has not been effective treatment until, you know, the last five or 10 years for that condition. Do I think something's going to come up? Fifteen years ago, I'd have said not

sure it's going to happen in my lifetime. But yeah, I think something, it's more likely that it will come up in the next 10, 15, 20 years, than that it won't, is my honest feeling. For now, the best kind of treatment remains community. In addition to shadow jumpers, families also have the XP support group, which was started by Amy's mother, Michelle, back in 2005. The group raises funds and offers resources to families facing financial struggles with medical expenses or protective gear like helmets. Amy is now its executive director. But support doesn't come only from other affected families.

Years ago, when Craig was playing high school football in New Jersey, the community contributed to a fundraising campaign to install stadium lights so Craig could play at night. Emma Sweet's church went the extra mile to make sure Emma and her family could attend services safely, by tinting their windows. 3M donated the window tint for Emma's home. One company even made it possible for Emma to go camping

with a special UV blocking tent. Here's Emma. Well, it makes me feel grateful for what I have because sometimes you just take things for granted, like I said. It just makes me feel grateful and loved. Like, people are there for me. For every stranger who doesn't quite unlawful, understand these conditions, there are many more who simply don't need to. They see a person

who needs a little helping hand and offer it unconditionally. Very special episodes is made by some very special people. This show is hosted by Dana Schwartz, Zarin Burnett, and Jason English. Our senior producer is Josh Fisher. Today's episode was written by Jake Rosson, editing and sound design by Jonathan Washington. Additional editing by Mary Dew. Mixing and mastering by Josh Fisher. Original music by Elise McCoy. Show logo by Lucy Kintania.

Executive producer is Jason English. Very special episodes is a production of I-Heart Podcasts. Hey, it's Nora Jones, and my podcast playing along is back with more of my favorite musicians. Check out my newest episode with Phineas. So I went home and I asked Billy, If she wanted to sing it, she immediately made it her own thing. You really know how to make me cry when you give me those ocean eyes. I'm scared.

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