Can be torture here along with alex silver to share with us emotional stories i can only imagine. But first explain to me what is eb. What does it stand for . It stands for but you know it is a handful. So you have to shorten it. What it is is that in my body im missing collagen 7 where it keeps the skin from staying together. So it is a bump could turn into a blister and scratch could turn into a gigantic wound so you have to be extra careful than any other kid would. Xd because where other kids would put a bandaid over it and feel better it is not as easy as that. You have to it can take days, maybe even weeks to heal. How old are you, john . Im 12. When did you find out that you have eb . I mean, as soon as i was born, i was born with eb, so ive had it my whole life so ive pretty much grew up on it. So never knew anything else having eb. Hard for you to educate about it . How typical is it to talk about . You know, at some point, you know, when it gets to parts where, you know, it is even hard for me to talk about. Immediate to get the word out to people that dont know what it is. And even if it is, you know, if it starts to pick you tear up or anything, that youre helping them learn about something as terrible as eb. You know, you just got to keep that in mind because, you know, maybe one day theyre going to, you know, help and make a big impact on eb. Tell me about your is it tough getting dress or walk us through a typical day like for you . Well every other day we would do something different. So this morning i had a bath which is where i unwrap all of my bandages, i soak in the tub. I soak in a tub filled with water so i soak in that so that it right. Then we would wash, rinse, rewrap my whole body. Takes about an hour, and sometimes even two hours. It is very painful. I mean, i have wounds, all over my body. Theres really not one day where theres not one on my body. So it is really difficult to get bandages off. You know, sometimes theyll be stuck. So theyll have to soak them off. Or then theres times when it is take it off no matter what. So, you know, it is yeah, baths are definitely the worst. But then we do dressing changes which are not bandages getting dirty or theres blood coming through the bandages well just change it. Clean that part up. And you know wrap it back so that it looks nice and clean until the next day when we do a bath. How tough is it for you as a mom . Since he was born . John was born right away we knew something was wrong because there was no skin on his left foot on one wrist a common presentation that trauma of bit ripped some skin off. And then that first sign that you have is that something is wrong. You hearsay they have a normal pregnancy, no problem, and in the delivery you finding out that, in fact, that is how i found out he had e. B. What did you go through you and your family when you learned severity of eb . It was a difficult adjustment militarily because we wanted to bring him home as fast as we could which meant quickly learning as much as we could about care, how it take care of him. Proper dressing, getting nursing in place at home. He has an older brother and sister tries to get the family together to figure out how we were going to care for him at home. Were blessed hes a great kid. He is. Other siblings other children how have they adjusted to their baby brother everybody wants to hug the baby, touch the baby. Not easy it takes a lot of time for my husband and i to get medical needs addressed, medication, and time away from his brother and sister. But they do their best like any [laughter] you know, we do what we can, right, john . Yeah. Alex your son, jackson, also a has eb. Yes. How old was he born with it . He was born with eb we have a similar experience to say where it was a healthy pregnancy when he was born, he actually had a heel mr. Speaker to test for gestational diabetes and took the skin off a the back of his foot. Soon his body started to blister a rare genetic disorder that isnt tested for given its rare occurrence. { is it now part of the series of tests that expectant moms. Ening you can test for it but how rare it is only in circumstances if you have a child or history of eb. Because it happened in the single gene opposed to things that affect the entire chromosome. Is jackson your first born . Our old fest hes six years old, a younger sister also. It was a huge change purse. Our first time as parents now i think the best thing you have going for you is no idea what we were about to get into. In a good way. From that we had to learn. We had to learn how to take care from him. We spent three weeks training every single day, and it was an enormous adjustment our scheduling my wifes able to work, everything you would imagine to adjust your life to make sure his life is as good as possible. Tell me about your foundation. For the soul mission treating since [inaudible] theres jackson. He loves legos, a great spokesperson for us, and since weve started weve raised over 3 million to accelerate research to the point where we actually in our foreseeable future can see treatments changes and quality of life so john was one of the strong education guys i know, doesnt have to deal with what he deals with on a daily basis. Eb is a rare disease. So being a rare disease it is not the most Common People thing but with right resources were showing not only change it but life changing treatments and potentially a cure through Research Funding that is all we do. [inaudible] a unique you have a unique fund raising. It is different. Tell us about that. We engage in a venture philanthropy model that means my background is in finance. As a foundation were helping fund Cutting Edge Research and a were taking the risk out of the process. Risking and asking in return partnering with both universitieses and commercial companies is that simply the Foundation Sharing the proceeds of the revenue should there ever be commercial success so we can fund more research. Same thing what happens in the fore profit world and simply teaing that concept says help us mac this more sustainable and help john and every kid like him and Rare Diseases out there by showing this model works. John hudson, when you tell me about ice cream. You know, all of the things that kids like to do. You know how tough . Well, you know, theres tons of Different Things that have tons of different effects on me just because i have eb. You know, i think when i was very young and first learned that chips could be a problem because even though the outside of my body is fragile inside can tear away as well. So i was eating a chip i think one day, and it wouldnt it went down, but as it went my throat. So theres times when that happens at least once a year, maybe twice. But this year it hasnt happened yet. What do you{ dream about . Dream . I dont remember my dreams very well. What do you want to do when you become as old as me . What is it that you hope to have accomplished . Well, honestly, i think about this often. I would settle for anything when i grow up. Because theres so much when having eb that you cant do, that is supereasy could hurt me in a terrible way. So honestly when i grow up, i want to get as a much done as i can. Even though i have eb. Tough for you to hear this . As hes got me in tears. [laughter] it is, it is. I think both of our dreams is to see fund a cure. We think it is within our reach,ko and we think that, you know, im proud of john hes a great spokesperson. Awesome. Hes here this morning although it was difficult for him. Had seven of water earlier and made it here because he wantses to tell you about eb and wants the future to be different. He wants other kids like jackson to reach their dream of a cure. And we think with it is within our reach. We want that to happen. Hoping on social media or instead of hitting share youll hit share and 5,000 per share. Right, john . John wont have to settle and should no child with eb have to settle whatsoever. They could have the right to pain free and a good lives like every child. Thank you so much for coming. You sir are probably bravest young man ive met. I hope that god will continue to bless you and your family thank you so much for sharing this story with us. I know it is tough for you to shake, but i give you biggest hug right now little boy if i could. But i know i cant do it but im sending it to you this way. Thank you for coming. Thanks for having us. Paul anthony from hip pop group is battling what hes also hell be performing when were back leukemia and Lymphoma Society has been lightening the walk throughout walks to fight blood cancers now they have a real force behind them. Grammy win or paul anthony of the band full force and michelle hello to both of you. So nice to meet you, 30{ years in the business. Brooklyn owned. I remember full force well, you know were going to catch up with what youre doing. Wherefore you think of hiphop it has been grouped into a big category now. I always thought full force, you know, before everything started being together it ising the when you thought of hiphop. Now were different. On the beginning stages of hiphop coming to mainstream with karate and producing history, roxanne so were not a hiphop group but r b producers but gifted to be able to produce pop r b hiphop and had success in so yeah. I have to tell you my sister played all cried out. That was your collaboration. You know that, and out of all of the artists youve worked with and things youve done. My favorite is im real. James brown. I played that cassette to death somewhere. I got you. But we know youre from brooklyn. But you have a Serious Health scare we want to know what happened you were in the gym. I was training heavy back then training very heavy. And my training partner life brother, colin a nurse he knows lump in my neck as i was doing squats. Amazing because i was squatting heavy he said you need to check that out. That looks unusual. I dont wait. Out. I did an a s and a that stands for fluid seems to be consistent with mental cell lymphoma i think know what that was. I heard that vaguely in the past. I typed out the mental cell lymphoma i saw what it was d cell, seeing this, damage, and then you see worlds fatal, curable and then my brother lives right there with me. First words that came to my mouth was wow. And then approximately 30 to 45 sentences after that next thing i said outloud was im not changing nothing. That is only thing that came to my mind im not changing in. I met my spirit, my internal fortitude, my constitution, so i went to work right there internally it was a trip, though, caught me offguard. How long ago . This was in 2006. In 2006 yes, and it was interesting i remember the first doctor that we saw world renowned doctor he said mr. George, you know Life Expectancy of what you have is two years past diagnosis. And my answer directly to him without try to be funny i said well you need to go to work right away. Because i can write a lot of hit songs in two years. I wasnt being funny but my mind set was i respect it had, but i dont own it. That was it and my energy from and so crazy because i did an interview and to that day, to this day, never once did i say why me . Why me . I was too focused on the dance, work. You know. You mentioned lew we know hem as bowlegged lew, your brother, lew he was a donor. No lew i call myself a cancer champion. I dont use survivor too much because i feel that cancer is viable to walk earth but champion concurs the world and hes a bone marrow champion. What you speak into existence is what really is. And it is amazing. Every needle i have to stop counting medals 300 and whatever it was he was there every needle, every test. My other brother works out like me. I know im a match theres no question it be. Not at all. He was a 1010 match but that is how we are. Lew, b. , we all brothers, and theres nothing that we will do for one another. So some people like that is amazing youre doing it. But that is what youre supposed to do, you know . Michelle. Paul went public when you are hearing entertainers, you know celebrities go public instead of the battles limited to the family. How does that make you feel when, you know, theyre out there championing and getting message out there . Truly amazing because somebody like paul and his family are able to bring so much awareness to organizations like Leukemia Lymphoma Society and a blood cancers we need that. Buzz our mission is to find a cure for blood cancer and improve quality of life for people like paul and his family so people dont have to go through what they went through. We cant do that without champions look paul because we need to talk about it and lighting the night so that we can raise as much money as possible to put directly into the mission so eventually we can so as far as success champions [laughter] like paul and his family, other things that yall have going on series of walks and other eventses youre active. Light the night rock of manhattan happened this thursday and upcoming number of walks from walks to running, and doing triathlon and cycling part of training to part of the man and woman year of the campaign ways to investigation their time, and a energy into fighting blood cancers we hope that everybody will. You say we have plans for you. You know [laughter] let me just say is that when i met michelle and then the entire family at lls thanks to my doctor and paul anthony and other doctor sota. The energy was just the frequency was just so exciting. Im talking about an event i went to, the office everyone. I knew this just fulfilled the purpose because i believe in transformative energy, and everyone there just means what they means what it is all a about. That is what is important to me. Success rate of longest transplant was 80 . By the time it was too many to get my transplant up to 90 in direct efforts like the society and finding break throughs. Important, i know a little bit if reinvents people know me from house party, movies, music because we have to reinvent ourselves recreate ourselves putsing more back into it. That is what the Leukemia Lymphoma Society is about putting back into it. Im so privileged to be aligned with them. A lot of cancer champions out there if i can speak and bring people out of the cancer closet speaking of when youre going to blow up our mic in a little bit when we come back. [laughter] a little something. I cant wait. Nice to meet you, good to see you again. Going to be performing he is back in the day youre going to hear him, coming up next. We work weekends here. Because it works for our patients. Here, at Cancer Treatment centers of america in philadelphia, we give our patients the freedom to make appointments that fit their schedules, even on weekends. Because we believe in being here when our patients need us, so they can keep living their busy lives. Weekend appointments are now available here. Learn more at cancercenter. Com eastern. Switch now, new york and get installed as early as today. Mom switched. We switched. I switched to Time Warner Cable and knew exactly when they were coming. Thanks to their 1 hour appointment window. For 89. 99 a month, youll get 100 meg internet, hundreds of hd channels, and unlimited calling across the u. S, and 34 other countries around the world. And for a limited time, you could get a 300 reward card plus tv equipment and epix included. Get installed for free as early call 18003419716. You doing today . This song on legacy with rest of my friends called i feel good, i look good, and god is good. But today were going to do it michelle. Were going to let you and michelle take it away and follow us on twitter, like s on facebook. Antwan lewis with you. Thank you for liking street you ready, listen for every woman, boy, girl, boy find happiness, you have to look within to finding joy when you hear words like i cant, im not they dont apply to you so please remember who you are always tell you to be true you nobody between you and me going to make it hot going to make it rain this is heavens train for god, hey father god, oh, cant you see all youve done for me show me the way every day blessing me hey because i feel good i look good im god good i feel good i look good im god goods lets praise him gifts sometimes i can take them away that is why i feel god good every day so let no one steal your joy no matter what is the reason ing in your heart nobody else can see all that he gives me day after day to show me the way cant you see all of the time you, you, you, you every day. Cant you see for me yeah i feel good i look good i look good im so god good praise him lets praise him yeah yeah