We rely on our courage. The kind of courage that shows up when we need it. And when cancer is least expecting it. Courage. Just one reason more of us are surviving cancer than dying from it. Give now to the american cancer society. Joele hannah fletcher. Will you marry me . Yes. Oh, my god. Jojo chose jordan, surprising so many of us. We will have to wait and see if a wedding happens in 2017. Welcome back to our year end roundtable. Jond guessing. There were plenty of weddings that did happen this year. Dean and nina. Lets start with one of my favorites. Kevin hart, he had a big year, multiple movies released. But his biggest moment was wedding in april. They tied the knot as did eva longoria and jose beston. Whose wedding you have leaked to have gone to . Kevin hart. Had a party. Yes. Kevin a buddy of mine. Dances on demand. Like, he is a good time. Did a great speech. Had everyone laughing. Party. Wonderful. Rather be there. No offense, eva. Sweet as can be. More romantic. That wouldnt be good for me. More mature. Twerking at kevins wedding. Kevin was. Russell wilson and ciara, vow of celibacy to not be intimate until they tied the knot they did in june. I love this. What do you think . No no i couldnt do it. I dont know how you do that. I drive the car before i bit. Just saying. I just dont know how, what if you get in there. And i dont know. She got that ring. Yes, she has that baby. Now expecting a baby. So obviously they broke that vow on their wedding night. We will see the bundle in 2017. Yes. But 2016, brought quite a few celebrity babies include might personal favorite, luna legend, daughter of christie tiegan and john legend. Did you see the fashion show . Little red riding hood. Her little feet. Alicen wonderland. The perfect. That one. Oh. I see daddys face there. Yeah, so adorable. All right, olivia wilde gave birth to daisy. And adam levine, first baby girl. Dusty rose in september. Dont know if he is the hottest dad in hollywood. A few hot dads in hollywood. We got one right here. Thats right. Thats right. Hes on the list. Add adam to the list. Dream kardashian. Daughter of rob and blac chyna. What do we think of the name . Fits in. Kardashians are outrageous. There is north. There is saint. South. I was going to say south. Dream. King. There is everything. Whole little crew now. Apple. Second generation coming. Gwyneth paltrow. Coming up. Blac chyna used the birth of dream as a way to take part in the biggest viral video trend. Our favorite mannequin challenges revealed when our 2016 year end roundtable continues. You love the soft feel when you take care of them. And at amope we love it too. But that annoying hard skin just keeps coming back. And always way, way, way too soon. No matter what you do. Amope presents pedi perfect. A new level of hard skin removal. It removes hard skin thoroughly yet effortlessly and reveals the silkiest smoothness you can rely on. Because it lasts, and lasts, and lasts. Give the gift of long lasting smoothness. Amope. Love every step. Stronger is blasting without risking her bones. Stronger is less pain, new hope, more fight. Because we dont just want kids to grow up. We want them to grow up stronger. And with your support, they will. Make a gift today at childrensnational. Org givenow considerations for access hollywood provided by 2016 was a big year filled with highs and lows. One of our favorite part was viral video trend. Mannequin challenge. Top three favorites. Kevin hart at the gym. What do you think, showing off strength and humor. Looks strong there. Hard to do. 225 on there. Good weight. Second one. Destiny childs reunion. Beyonce, kelly, michelle. What better way to reunite. Get them together. Blac chyna delivery room. Mannequin challenge is epic. I dont understand how she was able to do this. That takes that is madness. No, no. No. A wild year. Heres to 2017, bye, everyone. Fios is not cable. Were wired differently. That means incredibly fast 150 meg internet for the holidays. So in the 3. 7 seconds it takes gary watson to beat the local sled jump record, fly, gary, fly. His friend can download 13 versions of the perfect song. His sister can live stream it. While his mom downloads how to set a dislocated shoulder. Get 150 meg internet, tv and phone for just 79. 99 per month online for the first year. Cable cant offer that. Only fios can. Im sara gore and this is open house. This week we check out an ultramodern townhouse in new yorks west village, a Newport Beach home with beautiful harbor views, but first we join the designer of a dramatic contemporary home in the Hollywood Hills. Welcome to open house. Right now im coming to you from a sundrenched penthouse in new yorks Greenwich Village neighborhood overlooking Historic Union square. This impressive property features stunning views from virtually every area of the home through these floor to ceiling windows. The entertaining possibilities are endless here, as all the first floor spaces im talking living room, dining room, and kitchen open up to this huge wraparound terrace. Upstairs, the luxurious master suite even features its own romantic private balcony. In all, its got nearly 3,000 square feet of interior space, including three bedrooms, to go along with its 2,000 square feet of outdoor space. What more do you need . Lets get started in the Hollywood Hills with bradley bayou, the designer and developer of a visually dramatic home that is the perfect expression of his aesthetic. Crafted using sophisticated materials and a few surprising elements, the home this gives everything a zenlike flow thats accentuated with retractable walls of glass. See for yourself. Hi. Im bradley bayou. Im a designerdeveloper and im at a house in the Hollywood Hills. This house has five bedrooms, eight baths, and its built in the style of world modern, which means its based in midcentury but the world has influenced me in all my travels so all of that influence is brought here to this house. Anyway, im dying to show it to you so come on, lets see it. So this is the entryway. This is a very important part of the house because its the soul of the house. Its where everythings connected. The elevator in the house is a pneumatic tube. Its a vacuum elevator. There are very few of them in the country. If all the electricity the city went out, it drops to very safe place and lets you out. And here we are in the living room. Personally, its one of my favorite rooms because it really defines what indooroutdoor living is. And this room has the appearance of floating on water with the infinity pool, which overlooks the city, all connected to the room. So when youre actually in this room, you have this feeling of water and nature, indooroutdoor. Here we are in the kitchen. And i played with some different surfaces, including marble, stone, and wood. So this is freeform wood that i floated out as a bar above the kitchen area, which is covered in marble. The kitchen is a livein kitchen, so people can live and congregate. Theres a fireplace, theres an eating area, so its kind of a family room kitchen. This is your own personal club room in your house with bar, sitting area. This room, the floors are terrazzo. I designed the floor pattern on the floor, i designed the bar, and kind of entered elements of african and asian into the decor. I really enjoy using this room. Its really a fun space. This is the master bedroom and its what i like to call the zen bedroom. You slide back the 25foot doors, pocket them into the wall. The floor extends outside into a patio that overlooks the swimming pool. And again, you have the stone, you have the bronze fireplace, the bronze tiles. It gives you this feeling that youre somewhere else in the world. Here we are in the master bathroom, or what i like to call your own personal spa. I wanted to develop a bathroom that again works with the rest of the house, which is indooroutdoor. In this room like mirrors that are floating. Its a doubleheaded shower on a quartzite wall. The floating glass wall, theres no screws or bolts in this wall. These are all pieces of glass puzzled together hanging from a rod so that the wall actually swings. Its actually a curtain thank you all for joining me today. Its been a lot of fun for me. I hope it was for you. That living room really does feel like its floating on water and i love the idea of a zen bedroom. Stick around because up next, we head to a harborside estate in Newport Beach. Well be right back. Open house is sponsored in part by coldwell banker, this is home. This is where awesomeness happens. Find your home at coldwellbanker. Com. Ouse. Now were in Newport Beach, california, to visit a waterfront home that impresses the moment you enter. From its elegant courtyard to its airy interiors, this is a home that makes every day feel like an escape. Who doesnt want that . Hi. My name is brian sperry with the Smith Group Coldwell Banker residential brokerage. Were standing in front of 86 linda isle on the exclusive gated community of linda isle in Newport Beach, california. Id love to show you around. Lets take a look inside. And now here i am standing in the courtyard of this contemporary masterpiece. The Home Features nearly 7,000 square feet, four bedrooms, four and a half bathrooms. The architect did an incredible job designing this contemporary home, yet still making it feel warm and cozy. Were now standing in the living room, which is by far the most comfortable room in the home. This room features moroccan limestone. But the best part about this room is youre essentially on top of the bay, with incredible views of the Turning Basin behind you. Here we are in the stateofthe art kitchen, featuring rift white oak cabinetry, greece [inaudible] marble countertops, and an incredible wine chiller keeping all your favorite wines cold. I really love this kitchen because it opens up to the living room, the dining room, and the bay beyond. You can even see the harbor in the backsplash behind. And now were standing in the pool area, which is really one of the great architectural elements of this home. Its really one of two Great Entertainment areas, along with the game room. This pool features a french gray plaster. Also, the waterfall spills over into the pool and its got a large jacuzzi with plenty of room for all your friends. And here we are in the jewel of a house, the master bedroom. Of views, with the sun glimmering off the water in the morning . Its just spectacular. This room features beautiful french oak flooring, a spectacular cannonball fireplace, and rift white oak beams lining the ceiling. And now theres another room im dying to show you. Come on. And now we just stepped into the ultra chic master bathroom, which features dual vanities with vein cut travertine countertops. Next to that is the incredible soaking tub, which is right next to the steam shower, the Perfect Place to relax after a hard day at the office. Right now were standing on this cantilevered deck, which features 113 feet of frontage along newport harbor. It also has two seating areas and a dining area so you can take the views throughout the harbor. This is really what Southern California living is about. Id really like to thank you for joining me on this tour. I hope you enjoyed it. But for now, ive got to get home. Coming up next the, labased designer Orlando Soria shows us his unique take on holiday decor. Well see you after the break. Now labased designer Orlando Soria shows us his unconventional yet jubilant take on holiday decor. His mantra is to find a color scheme in something thats important to you and just go with it, varying the shades, the textures, and the materials to create a cohesive style that runs throughout the home. And of course, a little festive greenery never hurt anybody. We join orlando for a closer look. Hi there. Im Orlando Soria. Were here in my condo in silver lake in los angeles and today im going to give you a few tips about how to decorate your modern home for the holidays. To create an atmosphere of holiday decor, think of a color scheme and stick to it throughout your home. The idea for that color can come from anywhere. It can come from an object that you love, some artwork that you have that youre obsessed with, or clothing that youre into. In my case, i have a big gold piece of artwork in my living room, so i decided to also ow let me tell you a little bit more about this tree. I actually made it by hand and it took about four days and its made it from wooden dowels and 200 golden pompons. So youll notice a lot of the ornaments on the tree are in the same color world, but theyre not all the exact same color. So when youre trying to create a cohesive color scheme, everything doesnt necessarily need to be exactly the same. And heres a little tip that can save you some money if youre just Getting Started collecting christmas ornaments. I actually scoured a lot of Thrift Stores to find all these brass and ivory glass ornaments and then i made the rest myself out of paper. So if youre trying to decorate a tree on a budget, you can be both creative and thrifty. Because i dont have a Real Christmas tree, i decided to bring in greenery on my tabletop decoration throughout the house. For example, ive added greenery to this credenza in my living room and ive also kept some of my decor that i have from year round so that it heightens ted. I grew up in nature and ive had a long love for pine cones, so i was excited to use them in my decor. I incorporated them both on my coffee table in this beautiful ceramic tray and also in this handmade wreath that i created myself, which i then mounted from super high to engage more of the wall above the fireplace, which i think creates a much more dynamic look. For my dining setting, i decided to relate the color scheme to the living room but not have it be exactly the same. So in here we have a lot of neutrals. We also have a lot of layering going on. So weve got a runner and then over the runner we have placemats and then over the placemats we have this beautiful greenery. One of my favorite tips that i like to give people for a holiday entertaining for table settings is to keep their table settings low so that its not obstructing the conversation. Because as much as you might want to block out a member of your family, you probably sometimes the color of the space will actually dictate what kind of christmas decor you want in that space. So for my bedroom, i decided to do a blue themed Christmas Tree. I have all different kinds of ornaments all the way from handmade dove cookies to glass ornaments and little balls of yarn. So theres a lot of diversity there. And for the greenery, i decided to go with something that had a little bit more of a blue hue, so i used eucalyptus. All right, everybody. Thank you so much for stopping by. Remember, when decorating your own modern space be bold, be adventurous, and shes a great color scheme. Because even if you hate what you do, you get to take it down in a month. Wow, a pompon Christmas Tree isnt something you see very often during the holidays, but its undoubtedly cheery. I may just have to add that my christmas up next, we discover which designer Million Dollar listing new yorks ryan serhant and his wife, amelia, turned to when their soho loft needed a makeover. Well be right back. Welcome back. Share and share alike tends to be a good rule of thumb for any marriage, but that doesnt necessarily extend to decor choices. Newlyweds ryan serhant of mission dollar listing new york fame and wife, amelia, definitely had some different ideas on what they wanted their soho loft to look like. Before we got married, we decided that we wanted to find our own apartment and we were looking for a big, beautiful threebedroom penthouse in soho. And we found this place, but it didnt look anything like this. We couldnt do it by ourselves because my design sense is a bit all over. But i knew what id like. What did you say . It is kind of a little bit all over the place. Listen, im good at a few things, not everything. But i like what i like. I like colors. I like pinks and purples and you like navies and grays and white. Thats why we work so well together because we mix. And so we called in celebrity interior designer robin baron and she was able to bring our vision and our dream for our perfect soho penthouse to life my biggest challenge in designing this apartment for ryan and amelia was also the thing that made it the most fun for me, working with both of their styles and creating a new one together. Here we are in the kitchen. To keep this kitchen clean, simple, and modern, we decided to use marble one type of marble we even added a special touch, a waterfall of the marble at the end of the cabinet. One of the best features of this penthouse is the open floor plan, how one space flows into the other. But theres an art in that. You have to create distinctive uses for each space with fabric, color, and texture. Come on, let me show you what i mean. Take the window treatments, the curtains and the shades. Theyre neutral, but they have texture. Theres a slight pattern and texture to each of them that adds dimension. We used two fabrics on these dining room chairs, and its the perfect way to make that balance carry throughout the entire space. And oh, the color. You can see in this living room how its mostly neutral, but the right pops of color changes everything. I put the neutral whitish taupish on the sofa. Thats the biggest two pieces in the room. And then i took the same fabric in the purple and the hot pink and just made throw pillows. That alone created a whole different look. Well, ryan is a big risk taker and i wanted that reflected in his office. Even though this is a smaller sized room, i wanted it to have a lot of impact so i decided to use draperies that would go from floor to ceiling and to keep your eye moving through the space. I used a geometric patterned fabric for the shade to go with the drapes and i repeated the metallic theme on the ceiling with this silver tea paper. And i put it all together using this calfskin rug and added his favorite color, purple, to the chair across from his desk. Its not always easy combining styles with two people that have their own distinct taste, but its one im up for and one thats necessary when youre combining two lives. You never know where inspiration is going to hit. Always have an open eye and open mind. And as i always say, confidence begins at home. Thanks for joining us today. Im robin baron. Coming up next, were at an ultramodern townhouse in the heart of new yorks west village neighborhood. Welcome back to open house. Now, were in new yorks west village neighborhood to check out a luxurious ultramodern townhouse on a private stretch known as the news. With over 4,200 square feet of living and entertaining space, theres plenty to explore. We join architect and designer Andrew Kotchen for a closer look. Hi. Im Andrew Kotchen of workshop apd and welcome to the Printing House in manhattans west village. The Printing House is one of the most iconic we were given the opportunity to reimagine the mews garden in the rear of the building. When we began the design process, we were very focused on creating contextual modern language that we felt would strike the right balance with the history of the west village while still being something new and different. And through the use of unique materials like split faced limestone, large windows, and a great proportion to the facade of the building, we think we nailed it. I cant wait to show it to you. When you enter, we wanted you to immediately feel like you were in a townhouse loft. We achieved this by creating an open floor plan of living room, dining room, and kitchen. And we connected the Living Spaces with the outdoor space by the use of a full wall of glass. On the inside, we wanted to make sure that all of the spaces could be used in multiple different ways. In the kitchen, it was more about creating a sculptural element. The island is a real focal point in the space, where it feels like an object sitting in the middle of the room. And in this space, we wanted to use a unified material palette. We combined the marble used on the island with the backsplash etry. So lets walk down the stairs and go to the media room. For me, this space was a real design challenge. We wanted to create a space that we felt the whole family could use, so we split the room in two so adults could be on one and kids could be on the other. We have hanging swings for the kids, chalkboard paint on a few walls, and wallpaper thats meant for coloring. All the while, the parents can enjoy their favorite movie. And when the family is done in the media room, they can go back to one of the four bedrooms in the home. The master suite is located on its own floor. Entering this floor, we needed a transition between public and private spaces, so we created a study that could be opened and closed off to create separation from the bedroom quarters and the circulation. Going into the bedroom, we wanted to maximize the view to the mews. Theres a large window at the foot of the bed that connects you yet again to the exterior. At the same time, we wanted it to be private and relaxing and the pillows and the bedding. One of the most unique features of the master bedroom suite is the closet spine that runs end to end on the floor and it connects the vanity area in the bathroom in a seamless way. We topped off this townhouse with a versatile penthouse space, but really the goal of the indoor space was to have a seamless connection to the exterior, which is an amazing rooftop urban oasis. Thank you for coming on the tour. I hope you enjoyed our interpretation of a 21st century west village townhome. Well, thats all for now, but we hope youve been inspired by todays show. If you want to see any of these places again, head to openhousetv. Com. Or if you know about a unique property we should tour or you want to share your own decor ideas with us, just find us on twitter, instagram, or facebook at openhousetv. Thanks for watching and ill see you next week. A go wewe. Get. Angry. Out of control, mad to the core, angry. So cancer, youve got two options. Get out of the way or get rolled over. Anger. Just one reason more of us are surviving cancer than dying from it. Give now to the american cancer society. Sheer exhilaration, pure joy. Theres nothing like the freedom of summer camp. And theres no other camp like this. It feels like im a normal person. Here night is day, day is night. Because for these kids, the sun is the enemy. You can see when people are pointing. Yeah. That must be kind of hard. Stared at. I just said, how dare you. Called names. Someone has told me that, like, im a ugly in my hood. Someone said that . They live with rare and baffling conditions. I thought, what the heck is going on with my kid . Its so isolating. Imagine if you have a child and they cant ever go outside. Can you see that . Not to get morbid, but i could potentially die. Tonight an extraordinary look inside their world. Shes more adventurous at night. It was like, oh, i have two bodies. We do a lot together. Shielded from the sun. He j shadow. Hes always on lookout for the next safe place. Now in the spotlight. Out of the shadows. Welcome to dateline. Im lester holt. They live by night. They have no choice. Imagine dawn being something to dread. Daylight being dangerous. Only a handful in a million children have disorders like these. Even a few minutes in the sun can can cause serious harm tonight youll meet some remarkable kids and their families who share their stories. Youll see they do have light in their lives. It just comes from within. Heres kate snow. Reporter most people would describe this day as beautiful. Clear, blue skies, blue sunlight. You could gaze out into these waters for hours. That is, until your eyes catch a glimpse of this young girl, enjoying the day the only way she can. I like going outsides so i can get the fresh air instead of being, like, stuffy inside. Reporter covered from head to toe, wearing a shiny face shield that seemed to reflect an entirely different world. Its kind of hard to let people in when they stare. Her name is mckenzie and she lives here on an island off the coast of vancouver, canada. Because of awe unique medical condition, she has often worn this face shield. They wet her in 2014 when she was 13, very shy, a little guarded. Some of them are looking. I dont know if its because of the camera or if its because of what youre wearing. Do you notice people looking at you. I do, but i try not to focus on that. I kind of look at the ground so i dont really focus on the people. You can see when people are pointing . Yeah. That must be kind of hard. Her outfit certainly wasnt what her mom, shannon, had on mind on the day she found out what did you dream you guys would do together . The dresses. Kind of a lifetime of dressup and makeup, shoes, hair, all of that. But her vision of mckenzies future would fall apart quickly and dramatically. It all started when mckenzie was almost a year old. Shannon and her son shawn noticed a rash on her face. It started to spread down her face and then spread down into her lip and onto her chin. Mcken glis pediatrician didnt know what it was. Shannon took her to two different dermatologists. They, too, were baffled. Is it stuff were using in the house . Household chemicals or Something Like that . I remember feeling helpless for that seven months. Mckenzie also cried more, slept less than her twin brother. As these difficult months went on, shannon noticed a pattern. It actually gets worse when we take her who then ran a special blood test, and finally the doctor discovered the cause of mckenzies beweldering illness the sun. I was terrified. You dont expect a doctor to tell you that your daughter is allergic to the sunlight. Technically its not an allergy although people nickname it that. Its a rare genetic disorder thats extremely complicated. Though the doctors instructions to shannon on the day mckenzie was diagnosed were very clear. It was a matter of taking off my jacket to cover her. Because you werent even prepared to cover her up in the car. No. My mom and dad and i in the elevator scrambling to cover her up and get her in the car and get her home. That was in 2002 and mckenzie has avoided the sun ever since. Much o spent in her room with her thick, black curtains drawn. The worst experience is the guy calling me a vampire. Its just one of those things. You cant really do much about it. If the sunlight hits her skin for too long, she suffers extreme pain, itching and swelling. It will be like a burning kind of feeling. Like you got stung by a whole bunch of bees. Some patients say it was like dipping their hand in boiling water or being stabbed by 100 knives. This is one of the few doctors in the u. S. Who specialize in treating epp. She estimates there are fewer than 500 diagnosed cases in the united states, though she believes many more are undiagnosed or misdiagnosed. There is no cure for epp, which can be lifethreatening. The small percentage of patients will get liver failure. I think the number from the literature is about 5 or so. The longterm implications of epp are still not entirely clear but one thing is. Once a fullblown reaction to the sun starts, its extremely painful and can last for days. This video shows a young person with epp after too much sun. Whats burning . Shes in the bath trying to lessen her pain but its not helping. You cant just take a tylenol . You cant take a tylenol and not Even Stronger medications really work for the pain. Bit time he was 9, brady knew all about that. For most of his life he hasnt jumped in a sunlit pool or dashed outonto the playground for recess. Do you remember what it was like when you didnt know and you stayed out in the sun . Yes. It was not pleasant . Because i didnt know what was happening. Neither did bradys mom, kristen. I was thinking, what the heck is going on with my kid . And you go to the theres nothing visible. Thats the thing with epp, there are often no visible signs during or even after a reaction, which makes epp even harder to diagnose. And it was actually his pediatrician that referred us to a pediatric dermatology specialist. He had seen one previous case. How lucky were you that that doctor had seen another case. So lucky. Every case of epp is different. Brady feels the tingling and stinging coming on after less than a minute in the sun. But he can tolerate shade and wearing a thick, longsleeved hoodie gives him enough protection. Weve seen him. He jumps from shadow to shadow. He does. He shadowhops. You walk out any door out of school, out of the car and theres always a line that heres the shade and here is the sun. And brady stops. Hes always on lookout for the next safe place. The safest place for brady, of course, is indoors every day at school during recess, brady picks Three Friends to join him in the school gym. I feel bad for him because he doesnt get to do what others get to do. Does it ever big you you have to sit in the shade . Sometimes. I wish i could just be like them, my friends. Brady and mckenzie, their parents not only have to shield them from the sun but also from the stares and isolation that sometimes hurts even more. Growing up with such little light makes their future harder to see. Its a journey that will require more strength and creativity than these families ever managed. Coming up night falls and mckenzie shines. Is is there a way to let these can kids into the light . I was outside all the time with short sleeves on. A tremendous ray of hope. Y t. Why do people have eyebrows . Why do people put milk on cereal . Oh, are you reading why people put milk on cereal . Why does your tummy go grumbily, grumbily, grumbily . Why is it all mimics a stomach grumble no more questions for you ooph, that milk in your cereal was messing with you, wasnt it . Yeah, happens to more people than you think. Try lactaid, its real milk, without that annoying lactose. Good, right . Mmm, yeah. I got your back. Lactaid. Its the milk that doesnt mess with you. This is the time the time for harmony let love be the song that everybody sings fill the air with joyful noise ring the bells and raise your voice let there be peace on earth let there be peace on earth s. C. Johnson, a family company. Crsugar is everywherets sugar shield and crest complete has a sugar shield to protect teeth from sugar found in everyday foods. Crest complete. Shield your teeth from sugar. So sugar may visit, but its not sticking around my hygienist told me to try. A mouthwash. So i tried crest. It does so much more than give me fresh breath. Crest prohealth mouthwash provides all of these benefits to help you get better dental checkups. Go pro with. Crest prohealth mouthwash. Checkup . Nailed it. Ltry align probiotic. N your digestive system . For a nonstop, sweet treat goodness, hold on to your tiara kind of day. Get 24 7 digestive support, with align. The 1 doctor recommended probiotic brand. Can this much love be cleaned by a little bit of dawn ultra . Oh yeah one bottle has the grease cleaning power of two bottles of this bargain brand. A drop of dawn and grease is gone. That cough doesnt sound so good. Well i think you sound great. Move over. Easy booger man. Take mucinex dm. Itll take care of your cough. Fine ill text you in 4 hours when your cough returns. One pill lasts 12 hours, so. Looks like im good all night ah david, please, listen. Still not coughing. Not fair you guys waffles are my favorite ah some cough medicines only last 4 hours. But just one mucinex lasts 12 hours. Ditch the misery. Lets end this. Because she has a condition called epp, mckenzie has to apply special sunblock before she walks out of her house. She wears uv resistant clothing and a hat even when shes inside sinc cause a painful reaction in mckenzie. While she needs her face shield is needed for prolonged sun exposur exposure, her special hat has protected her every single day since she was 2. Im the most embarrassed when we have to do the National Anthem and im the only one with a hat on and i cant take it off and everybody stares and im like, oh, no. A few days before she started high school, mckenzie, so shy already, had fears that even more kids might stare. So, i guess we get to go on a little bit of a tour. Yes, we do. But her mom had more concerns. She met with the vice principal to make sure the schools windows and lights were safe for mckenzie. Im still getting a zun the meters in their hands were she canning for ultraviolet light. One or below is safe for mckenzie. Im getting one. What are you getting . I got one. For extra protection from the overhead lights, mckenzie has a special chair with a canopy. But eating lunch in the sunlight on a has never done that. If i could not go out in the sun what is life . Isnt there one girl at school who can employ out in the sun . Shes allergic to it so she has special lighting. I would like to go outside and eat with my friends that eat outside, but, unfortunately, i have to stay in here. Luckily, some of my friends are very thought and a half they stay in here with me. But when the sun goes down, mckenzie and her friends can go anywhere they want. Shut out from the sunlight, boxed in all day, mckenzie finds her radiance at night. I make sure i have like a night wedding. Shes more adventurous at night. At home in bethesda, maryland, bradys life is similar. He, too, can play more freely after dark. Throw it as hard as you can. I throw as hard as i can, im going to hurt you. Please dont. But he doesnt seem to appreciate the night as much as mckenzie does. Thats because brady would rather play in the daylight and his mom, kristen, thinks there may be a way to bring him out of the shadows. All i want for my son is that some day he may be able to feel the warmth of the sun. Kristen is hopeful. Theres an experimental treatment out there designed to give people with epp temporary protection from the sun. The drug, afamelanotide. Each dose implanted beneath the skin will increase skin pigmentation for two months. Basically, the drug would give brady a medicinal tan. What it does is give a layer, a protective layer. Its kind of like a coat of armor. Thats a great way to look at it. Although the drug hasnt been approved bit fda, kristen has been telling her son about the treatment ever since it went through a how does it make you feel inside when you think about the possibility of having a drug that could help . Makes me happy. Bradys mom got to know a young man named andrew terrell, who had the treatment for several months during that 2010 drug trial. Since that drug trial hes been waiting for the drugs availability, too. That summer i coached baseball. I was outside all the time. There was no reaction. We arranged for him to speak with brady about the implant. How did it feel . It was great. So it was really easy to get. 20 minutes in the doctors office. And then it works for two months. And i got really, really tan. Does it hurt . When they injected it . Yeah. It hurts for a couple of seconds maybe but so worth it. How did you hear about this new treatment . My mom told me. When i get it, i can finally go in the sun for a while. The implant seemed to work for andrew, but its never been tested for children. Do you ever worry that even though the drug shows so much promise, that maybe it wouldnt work in brady . What if youre giving him false hope . That could be. That could be. I hope not. Brady did a picture at school of a kid on a lounge chair and a huge sun in the background and the only words on it were hope. This is what he wants. This drug might help mckenzie, too, since she has bradys same condition. Her mom, shannon, has a different attitude. She doesnt want her daughter to hold out hope for a treatment and certainly not for a cure. I dont want her to get her hopes up and then just never see that light at the end of the tunnel. I want her to live with it and live healthy with it. Shes taught mckenzie to know her limits, like on this foggy morning during pe, when mckenzie played for about 30 minutes with just her special hat and sunblock on. I was able to play today because it was not too sunny and co mom would want her to sit under that canopy