this is "nightline." >> tonight, she went from being a happy kid to a shut-in, riddled with pain. >> it hurts! >> the quest to solve a medical mystery. a global hunt for the world's best barbecue leads us to these south american cowboys making mind-blowing meat unlike anything you've ever tasted before. as we prepare to grill this holiday weekend, tonight, we're learning their secrets. and the lion king kids. can you feel the excitement tonight? as many schools cut out art program, a new mission to bring musical theater back into the circle of life. but first the "nightline 5." if you're suffering from constipation or irregularity powders may take days to work.

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good evening. thanks for joining us. what happens when even walking outside causes extreme pain? well for the operative 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 abbie boudreau. >> it burns! >> reporter: it's every parent's worst nightmare. a happy child normally looks like this. reduced to this. >> it burns, mommy! >> some days she would 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. >> reporter: a medical mystery. >> hopeless. there's nothing you can do. >> reporter: savannah falkerson was 4 years old living in california when her mom noticed something strange. >> we'd be outside and she'd start screaming. we'd be at the pool and she's skrem she's burning, she wants to go i'd be like we just got here what is the problem? i hurt i burn i burn i want to go in i can't take it! >> i would really itch a lot. and it would turn my hands and feet really red. like if i scratched too much it would like blister kind of.

then scar. >> reporter: andrea would put savannah's hands in bags of ice, or a cuttino mobley bathtub. nothing would help. >> i've taken her to the doctor when she's been crying what's wrong with her? they just tell me she as eczema. i'm going, you crew like that from eczema. >> reporter: for five years they had no answers. until they met dr. mineli lu at children's hospital, los angeles. >> in savannah's case we can see that she has developed red welts on her hand as well as her fingers. >> reporter: and this along with her young age, made dr. lu suspect savannah had arythropoietic porphyria. it was featured on "house." >> look at her arm. >> reporter: but could this be what was affecting savannah? >> the challenge is body how rare the condition is as well

as the subtlety sometimes. there may be some red patches, maybe areas that look sunburned, that can lead to a long lag in diagnosis. >> reporter: after years of no answers, a simple blood test finally gave them one. >> what did the doctors finally tell you? >> that she had -- say it. >> erythropoirtic porypheria. >> reporter: it would mean a life sentence confined to a world of shadows. >> how do you explain this to your friends? >> that i'm allergic to the sun, i can't be out, i can never be at the beach, can never go to a sunlit pool. literally i have to be in the dark. dark's my home. >> reporter: savannah now 11 years old, has to wait until evening to swim in her pool. >> a friend's definition of a normal day and my definition of a normal day are way different.

hers is bright sunny, and beautiful. mine's dark, cloudy, and rainy. >> reporter: 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 my scarred hands. they called me old lady hands. or umbrella head. because of my big hat that goals around. so i don't get burned. >> they don't understand? >> they don't. >> reporter: savannah doesn't let that get her down. >> look 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. >> reporter: the family has made adjustments for the little girl with boundless energy. >> you have a trampoline in your living room. who has that? >> not many people. >> not many people. >> reporter: 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. >> night baseball is fantastic, we're enjoying this having fun, that's what counts. >> reporter: these kids suffer from another rare genetic skin disorder, xp. any exposure to sun line can cause third-degree burns and lead to cancer. >> i don't feel left out when i'm in camp. when i'm outside of camp i feel left out. >> reporter: when their daughter katie was diagnosed with xp dan and karen founded camp sundown in upstate new york where day is night and night is day. >> we do normal kid stuff. we turn the night around and do it a different time of day. >> reporter: these rare medical conditions aren't new. some scientific historians speculate vlad of tran silsylvania had epp. he's believed to be the historic basis of dracula, giving rise to legends that continue this day in popular tv shows like "vampire diaries."

>> run, run! >> reporter: just today, new hope for savannah and others like her. a study about a drug treatment published in "the new england journal of medicine." >> with this drug you're going to increase the melanin in your skin, you're going to tan in a couple of days. the tan and melanin will act as a safety filter for the harmful rays of the sun. >> reporter: although the study's findings are promising, the drug is only available in europe. awaiting fda approval here in the states. >> at the moment this is the only drug that's really effective as shown by the clinical studies. >> what is your big hope? >> that there's a cure out there. and like kids don't have to live with this. >> reporter: 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 skin conditions that can present with exactly the same findings. that's where seeking attention with either a dermatologist who

specializes in children or a pore fear yeah specialist is very, very important. >> i wish i didn't have it. i wish no one had it. >> reporter: 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. like, when i get older, like it's not going to change what i want to do. like, i'm still going to want to have like everything that i possibly can as like a normal life. >> what would that normal life look like to you? >> a house on the beach. >> on the beach? a sunny beach? >> yeah. >> really? >> yeah. it's not going to tear me down. it's going to just build me up. >> reporter: for "nightline," i'm abbie boudreau in santa clarita, california. up next what do these south american cowboys know that the rest of us don't?

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lots of husband firing up

the grill or watching somebody else fire up the grill this hol dad weekend. the woman you're about to meet says if it's just burgers and dogs on your menu it's time to expand those taste buds. tonight, one american chef's taking us on a succulent south american adventure that involves less easy to love parts, from nose to tail. she says they're not only delicious, they can be healthy too. >> look at how beautiful it is, so many cows. >> reporter: three hours outside of monte vedeo, uruguay, we're on the hunt for the world's best barbecue. >> uruguay is very flat. that's part of why it's so easy to raise beef here. >> reporter: the american butcher, rancher, and restaurateur is heading into goucho country, the land of the famous south american cowboys. >> cooking this for two and a half hours, three hours over this low, slow eat. uruguay is where i come for

inspiration. everything is rough and unfinished. i'm going to hang out at the grill and eat the whole thing. >> reporter: anja was once a vegetarian. then -- >> i had a radical experience. i went from low fat, no fat, '90s lifestyle to moving to southern italy and eating a ton of pork fat and lost weight and got healthier. >> reporter: now she's all about the meat. not just any meat. raw meat. fatty meat. she's making it her business to get the rest of us to eat like she does. >> that was delicious. right here. uruguay is the land of meat. this is where it all starts. so this is our santa monica butcher shop. >> reporter: back home in california she's building a meat empire with a string of butcher shops and restaurants. bell campo meats. >> everything from guinea fowl and quail and squaub to classic beef and pork. >> reporter: and she's assembled

an army of true believers who work there. >> i grew up on fish sticks and hot dogs folded into mac and cheese. like a lot of people. i didn't know what food could taste like. >> i had an eyeball in crete. and that was pretty adventuresome. >> it was a big goat roast. >> reporter: they don't insist yolls but they say meat is more about chicken breasts and lean steaks. >> this is all fat from the big from the fatback. and it's insanely delicious. the craziest yummy taste that you didn't know existed. >> been eating fat since the beginning of time. >> that's a little lamb. >> very little. i chose it because it's tender. >> reporter: anja scours the world in search of new recipes. >> i'd love to go to northern scotland and do -- taste mutton with fur on traditional-style butchery. >> reporter: if this sounds

unappetizing, according to anja it's because we've lost touch with the way we should be cooking. >> the philosophy is a simple old-fashioned way of eating. it's the opposite of fast. instead of grabbing something you can eat in your car, it's cooking at home. >> reporter: the way people cooked for centuries. which brings us back to those cowboys in the mountains of uruguay. these guys have what a lot of people say is the best grilling technique in the world. >> it's going to be very very tender. essentially a slow smoke. it's called asado. they cook all the meat they go very slowly, and it's really an all-day affair. now we're going to make blood sausage. with blood and the key is to have good blood. it needs to be very liquid. if the blood is coagulated when you make sausage, as you chew it there's kurds of blood in it. it tastes bloodier. a little nutmeg. mm, smells like christmas. >> reporter: they cook up every last bit. asado is all about the slow.

>> here we have a number of cuts that are being cooked over a pretty low, slow fire. these are little ribs over essentially a low temperature for hours and hours. the meat gets quite tender. and this lovely fat renders out and bathes that meat in liquid fat. it stays really tender and moist. >> reporter: that slow cooking is what anja says enables the gauchos to get a tasty meal out of cuts the rest of us would throw away. >> a lot of these cuts in the american tradition, we'd be cooking them with moisture braising them. they're tough cuts. top round, cuts like that. with this very low heat they're essentially doing slow cooking which makes the flavors really come out, and almost smokes this meat. >> reporter: since most of us don't have 12 hours to make ja's latest plan is to package these dishes and sell them to you for cooking at home. >> i was really impressed by the fresh intestines. >> reporter: she'll bring the recipe back to santa monica where her chef told us get this raw lamb and pure lard on

toast are already big sellers. >> seeing fatty intestine, how it grave that great crust, is amazing. that we can mess around with. it looks spectacular to sell it fresh because it's hairy and covered in fat. i think people will freak out about that. >> reporter: yes, she knows it's not for everyone. yet. but she has a strategy. >> deliciousness wins. and conquer the heart forthrough the stomach. make the change delicious. >> so what delicious things will you be grilling up this weekend? i for one will be marinading. head to our "nightline" facebook page and share your barbecue secrets. up next -- over two decades after simba debuted on the serengeti, a new school program is bringing "the lion king" musical to stages far from the bright lights of broadway. proof of less joint pain. and clearer skin. this is my body of proof

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you know the creative arts seem dangerously close to going the way of the dinosaurs at many schools across the country. but tonight one radical new program is helping students and teachers get back in touch with their wild side. the wilds of africa, that is. ♪ the circle of life ♪ >> reporter: it's been 21 years since baby simba first pounced onscreen and into our hearts. and soon after, the curtain rose on the broadway show. now a small pride of fourth and fifth graders bringing new life and a new voice to "the lion king."

>> everybody turn off your voices open your listening ears -- >> reporter: ar.m. bacon elementary. >> simba. >> reporter: alicia mccall is putting on an adaptation of disney's juggernaut. >> a lot of our kids maybe couldn't play outside after school so giving them this opportunity has opened doors for them. and also i found gave them a purpose. >> reporter: this school one of the first using the lion king experience, a multi-media curriculum for students and teachers who may not be trained in theater. >> the kit holds your hand and says, here's how to stage it. here's how to choreograph it. >> reporter: two months before the show students learning african languages. and the language of theater. >> we're learning about why people say what they say. how to communicate the ideas in a show and in real life as well. >> reporter: abc's parent company disney rolling out "the lion king experience" to 2,000

schools nationwide. >> to what extent is this filling the vacuum of a lot of the budget cuts that have been made in musical theater in schools? >> we've cut all these day ways for kids to explore themselves and chun date to others. we have filled that >> five six, seven, eight -- >> reporter: with a marker and paint, the kids create their own pageantry. mimicking the elaborate puppetry of broadway. a homemade savannah crafted by glue gun, cardboard, and a whole lot of imagination. >> we're making our costumes. i see things like out of school sometimes i get ideas, then i start drawing them. >> show me a face you would make if you were very frustrated. >> reporter: life lessons offstage too. >> i used to have fs in reading. now i've got a "c." >> reporter: after three months of prep for our kids, it's showtime. >> scared excited. >> reporter: a full crowd, costume prep, and a heartfelt

"break a leg." >> we are proud of every one of you and you should be proud of yourselves too. >> welcome to our village. today we'll share with you our favorite story. ♪ ♪ >> the idea that a kid will understand the world through art and that art will weave in and out of it that's their right. it's not a gift it's their right to make art. >> i have a few kids who have already told me they're going to win tonys one day. ♪ >> now that is worth applauding. thanks for watching abc news. tune into "good morning america" tomorrow. as always we're online at abcnews.com. good night, america, and have a great holiday weekend.

hey, nemo, pizza ready? look at this. ah... what the hell? oh, hey. hey, guys. hey, moron where were you today? whoa, whoa, what are you-- how come you're not golfin'? we waited for your big nose for an hour. then we couldn't play because a tournament was starting. nice work, big nose. ah, man, i'm sorry. i'm sorry. i just had to do something at the house, you know. i just had to... i had to... had to do that something. we kept calling. why didn't you pick up the phone?

yeah, i know but i couldn't hear because i was fixing the dryer and, uh... that damned basin of it, it's all... out of its hoop. what, are you trying to lie or something? all right, guys, listen. i'm sorry. i couldn't make it this morning because debra and i, we just, you know, we couldn't get out of bed. oh, for cryin' out loud... no, but listen... i didn't want to. i was ready to go. i was ready to go. we were in the kitchen-- all right, ray, look we don't need to hear the details. i bought new balls and shoes. he owes me details. listen, junior high, shut up with the details. it's his wife. and, ray sex over golf? it's your wife. ray: lisn-- here's the pie, ray. you guys gonna order or are you just gonna color the place mats? no, no. don't der anything, guys.