By Adem Lewis /

The Sun. Star that gives life. I don’t know what this is anymore! I’ve heard people that are allergic to peanuts, I’ve heard of people that are allergic to cats, but, how can you be allergic to the SUN?! No. “11 year old girl allergic to sunlight” How? …but how? This can’t be happening! How does she go outside? How does she live life? That’s Impossible! You cannot be allergic to the sun. But apparently, you can. “What happens when even walking outside causes extreme pain?” “Well for the brave girl you’re about to meet, simple pleasures like splashing in a pool or running in a playground, led to a baffling set of symptoms, until one doctor discovered the unlikely source of her suffering.” Here’s ABC’s Abby Woodrow It hurts. *crying* It’s every parent’s worst nightmare. A happy child who normally looks like this. Reduced to this. Some days, she would just cry for hours, and hours on end. And it just felt like lava was being poured on me. Like, it burned from the inside out. A medical mystery. It’s all so hopeless, there is nothing you can do. Savannah Fulkerson was four years old, living in sunny California, when her mom Andrea first noticed something strange. We would be outside and she’d start screaming when we would be at the p– So you’re telling me… You’re telling me… That there’s people that are actually allergic to the sun?? Oh my God! Yo! I just realized I paused at the worst frame possible! *chuckles* I’m sorry! OH.. Okay, moving on. If this is the case, and she’s actually allergic to the sun, I feel so bad for her. She can’t live life, I don’t know how she does anything. We’re gonna keep watching this To see what actually happens She’d scream, she’s burning and she wants to go in, and I’d be, like we just got here, what is the problem? I hurt, I burn, I burn, I wanna go in. I can’t take it. And I was like, really itch a lot, and it like, would turn my hands and my feet really red and if, like, I scratched too much, It would, like, blister kind of, and then scar. That looks terrible! So what? It basically dries up her skin to a point where she starts bleeding, or, I don’t understand? What kind of allergic reaction that’s actually possible with sunlight? Like blister, kind of, and then scar. Andrea would put Savannah’s hands in bags of ice or a cold bath tub. Nothing would help. I’ve taken her to the doctor when she’s been crying going , “Here what’s wrong with her, what’s wrong with her?” And they just tell me she has eczema and I’m telling them, “It’s got to be more than eczema.” You don’t cry like that from eczema (That’s not eczema.) For five years the Fulkersons had no answers (That’s way worse.) until they met Dr. Minnelli Lu at Children’s Hospital Los Angeles. In Savannah’s case, we can see that she has developed these red welts on her hand, as well as her fingers. And this along – It’s a great thing that she doesn’t get anything on her face, though. Think about it, you get it on your hand, that’s still terrible, but not as bad. Imagine you got it all over your face. – along with her young age made Dr. Luu suspect Savannah had erythropoietic porphyria. What? Erythropoietic porphyria? this is why people don’t like going to the doctors what is this term yeah, alright, spelling bee contest can you spell erythropoietic porphyria? erythropoietic porphyria e.r.i. UHRR wrong also called EPP a rare and sometimes deadly disease it was even featured on the television show “House.” look at her but could this be what was affecting little Savannah? the challenge is both how rare condition is as well as the subtleties sometimes there may be some red patches maybe some areas that look sunburned and that- Wait. I just want to know how many people actually affected by being allergic to the Sun. Alright, are some people really allergic to the Sun? What? Some ten percent of the world’s population might have a skin reaction when exposed to the sun that can lead to a long lag and diagnosis after years of no answers a simple blood test finally gave them one what did the doctors finally tell you that uhm she had you want to say it? erythropoietic porphyria See, she can barely say it erythropoietic porphyria wait hold up hold up erythropoietic porphyria why is she so happy? it’s literally like saying yeah the doctors found out have I have cancer you should take it seriously this is serious I’m happy to see her smiling and a terrible condition that she has but it should be taken seriously it would mean a lifetime sentence confined to a world in the shadows how do you explain this to your friends I just usually say that I’m allergic to the Sun I can’t be out like i can never go to the beach I can never go to a sunlit pool like I have, I’m literally, I have to be in the dark I can’t even imagine not being able to go to the beach the beach is literally my life I it’s my favorite place in the whole entire world to be in she has such an unfortunate rare case that she can’t even go to the beach. At least she’s still alive it’s not something that actually risked her life. The dark’s my home. (laughter) Savannah now 11 years old has to wait (That was a nervous laughter, I can tell now) until evening to swim in her pool. My friend’s definition of a normal day and my definition of a normal day are way different. (giggles) Hers is bright, sunny, and beautiful; mine’s dark, cloudy, and . . . rainy. And when she does (That’s so sad! Oh my god, yo, I feel) so bad for her. That laughter is, like, that faked laughter that you have to kind of give out because you don’t want, you don’t want to show your true emotions. And my definition of a normal day are way different. Hers is bright, sunny, and beautiful; mine’s dark, cloudy, and . . . rainy. (giggles) Hers is sunny, beautiful, beach, love. You know, mine is dark, cloudy, depression, shadow. And when she does venture out into daylight, it’s an effort, putting on this UV protective clothing. People have made fun of you because of this. Yeah, because of, like, my scarred hands, they called me, like, old lady hands or umbrella head because of my (NOOO!) big hat goes around so I don’t get burned. They don’t understand. They don’t. But Savannah- What do you mean they don’t understand? What the heck? Why they even say anything to you like that? You literally have a disease that makes you allergic to the Sun and these people are making fun of you! Yo, these people, they’d go to hell, bro. They’ll go to hell. – doesn’t let that get her down. But look at you’re – you have such a good attitude about it. How is that possible? I just try to think positive because I know kids somewhere else have way worse than me. Preach! The family has made adjustments for the little girl with boundless energy. You have a trampoline your living room! Who has that? Not many people! Not many people? Savannah’s not the only kid living life in the shade. When the sun goes down, a fun summer day is just beginning for these one-of-a-kind campers in New York City. Being in middle of the light, playing baseball is fantastic. We’re enjoying this, we’re having fun and that’s what counts. Oh, these are all people that are allergic to the sun? These kids suffer from another rare genetic skin disorder called XP. Any exposure to sunlight can cause third-degree burns and can lead to cancer I don’t feel left out when I’m in camp. But, when I’m outside of camp I just feel left out. But these rare medical conditions aren’t new. Some scientific historians speculate Vlad III of Transylvania had EPP. He’s believed to be the historical basis for Dracula. So Dracula is based off a guy that had the same thing that this girl has. What is your big hope? That there’s a cure out there and, like, kids don’t have to live with this. Experts say less severe forms of EPP can occur. Some symptoms are redness over areas exposed to the Sun, such as the nose, the cheeks, or hands. There are, of course, many other skin conditions that can present with exactly the same findings, and so that’s where seeking attention with either a dermatologist who specializes in children or a Porphyrius specialist is very, very important. I just wish I didn’t have it. I wish no one had it. It didn’t happen. But for Savannah and her family the hope that maybe one day she’ll be able to feel the Sun on her skin without pain is enough to keep her smiling. It doesn’t define me, lik,e when I get older, like, it’s not gonna change what I want to do. And like, like, I’m still gonna wanna have, like, everything that I possibly can as like a normal life. It’s not like she can’t go outside at all. She can go outside. She just has to be fully clothed, fully covered. So she still, it’s still possible. She can still go outside and do normal everyday things, she just can’t feel the Sun on her skin. That’s basically it. It sounds like she’s really struggling with it even though she’s hiding it with her fake laugh. There’s still people out there that are allergic to water. Oh my God, they’re literally allergic to water. Your body, is what? 75% water? This was the eleven-year-old girl, she’s so adorable. I love this girl, don’t worry, they’ll find a cure soon. I mean science and medicine is always advancing, you will find your cure, and I hope for the best, guys. But yeah, guys. That’s going to be it, and peace out!!

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