Rest in Peace John Hudson

- This is going to be a hard video for me to get through. I ask for your patience and your understanding. John Hudson has been a beloved member of our community for nine years now. Ever since I first met him in 2017, he has continuously shared what his life was like with epidermolysis bullosa, a rare disease, and every year since 2017, I would go, I would go and sit beside John Hudson and he would tell us how he was doing. John Hudson passed away on April 19th at the age of 23. As I contemplated the way to properly honor John Hudson's legacy, it just seemed impossible to me to make a video about John Hudson without John Hudson. He was just such a powerful advocate that I feel I could never do him full justice of painting the picture of just how incredible he was and how much he meant to so many different people. So I figured the best way to honor my friend would be to share the story of our friendship. Before I tell you friendship, I think it's important to explain what epidermolysis bullosa or EB is. Throughout this video, I'm going to include clips of John Hudson's interviews over the years, so you can hear from him directly. Here's him explaining the cruel nature of EB. - I'm John Hudson, diligent. I have epidermolysis bullosa or EB for short. It basically means that my skin, the dermis, doesn't stick to the epidermis below it, so it ends up creating a lot of blisters and wounds. I'm completely wrapped up from neck to toe because I have the equivalent of third degree burns all over my body. It's all over the body, and not just outside, but inside as well. - How would you describe the level of physical pain that you experience? - It's indescribable. I mean, one through 10. It's at a hundred, you know? Like it's not, it's not something I can measure. - When I first met John Hudson in 2017, I never imagined that our lives would become entwined the way they eventually did. At that time, I had never heard of epidermolysis bullosa, and didn't intend to create a near decade long series about how this disease would progress in a person that I grew to love. In our first interview in 2017, I simply went to make a new friend, learn about a disease that was new to me and see if I could make him smile for a day. Are you ready for this? - Yep. - John, what do you want the world to know about you? - On the outside, I may be, you know, very delicate and, you know, I have bandages all over my body. You may see blood or scabs or something unusual that you don't see any usual child, but, you know, on the inside, I wanna be treated like a normal person. - After that interview, I left his house and I noticed there was a school yard across the street. There were children running and playing and laughing, and I couldn't help but think what it's like for John Hudson to hear that every day while he was inside in constant pain. I would later ask him if that cheerful joy of children running around and playing from outside his window ever bothered him? And he told me that it never, that it never even crossed his mind to feel that way. A year and a half later in 2018, I returned to New York to interview John Hudson again. Over that year and a half, him, his family, and I stayed in touch, and I felt quite close to them. Upon entering their home

I noticed that EB had progressed in John. He seemed to be in more pain. His mobility was more limited, but his spirit continued to shine bright. I asked him how he finds meaning in his life, given his never ending battle with EB. And at the age of 16, this is what he told me. Do you believe life has a purpose? And if so, what is the purpose of your life? - I don't know. You know, everything should happen for a reason. And I think that every once in a while when I meet someone and they say that, like, I've helped them, you know, sometimes it's like hard to think like, how have I helped you? But after 16 years of like meeting so many people saying, like, you're an amazing person and stuff like that, and maybe I've started to believe them and maybe I do something right? So if this is the payment of helping other people, then bring it on. - A little over a year later, we planned to film another interview, but 2020 hit and we were forced to film virtually. During that interview, John Hudson told me all about how he flew across the country to participate in one of the first ever clinical trials for EB. - They did this thing called a skin graft, and what they did was they basically took biopsies of my skin, and then they grew it into these playing card sized sheets, and they corrected that skin. - I often think about how much John Hudson had to sacrifice in order to be part of that study. Travel is not easy for somebody with EB. It comes with increased pain and increased suffering. He got on a plane and went across the world to be part of that study. That's because, and he told me this countless times, his biggest dream was to make sure that nobody would ever have to suffer in the same way he did. In 2022, I returned to visit. His health had noticeably diminished, and John Hudson was now bedbound. Despite this, his greatest goal was still to advocate for those with EB and be part of one day curing this disease. - It's a little weird when you see like all the other things that other 19 year olds are doing, like, going across the country for college or like, just different things that, I mean, tons of kids are doing at my age, but I also know that I'm I can't get as far as quickly as everybody else. I know what my life is like. I know what other people's life with EB is like. So it's easy to get upset, but I try not to look at much of the negative things that happen and more of the positive things that happened with so many of the things in the past few years. I mean, when I was first born, there were absolutely zero studies going on anywhere around the world for EB and how to cure it, and now there's dozens going on. - I remember leaving his house that day and wrestling with the fact that we may never meet in person again. Fortunately, he rebounded and in 2024, we had another interview and John Hudson was over the moon excited to tell me about the first ever FDA approved treatment for EB. - And you know, a lot of people aren't as blessed as I was to have such a loving family and a loving community

that take care of me as much as they do. - I know there's a lot of smart people doing research into EB and finding treatments and looking for cures. Can you update me on what's going on with all of that good stuff? - Yeah. Well, John Hudson has now been in at least two clinical trials, really, he's a subject in a third. But we're finally seeing the first FDA approved treatment for EB. - You know, when I was born, there was zero studies on EB. 20 years ago, there was absolutely no one looking into, well, what is EB and how does it work? How can we fix this? How can we treat it? - My favorite part of visiting John Hudson wasn't the interviews, it was the hours we spent talking before and after we filmed each time. When we were filming these interviews, it was always quite a serious topic. We were talking about EB. So I'm not sure if it really came across just how funny John Hudson was. He would make me laugh and his family laugh. He was quick witted, very humorous. We also talked for hours about the most random of topics, his love of the culture of Japan, cats, his animals, the New York Rangers, and his love of superheroes. I never told him this because he probably would've just laughed at me, but John Hudson is definitely one of the biggest heroes I've ever met, and I know there's people around the world who feel the same way. We last met in December of 2025. I could tell right away that something was different. John was in intense pain. Even before we started the interview, he was already hurting a lot, to the point where I asked him if he even wanted to do the video. He told me that sharing his story and this community meant so much to him, that he wanted to fight through the pain to share his story once again. Throughout that video, we had to take several breaks just so John Hudson could center him himself and regulate the pain he was feeling. During that interview, I asked John, when he's gone, what is it that he hopes he's most remembered for? And this is what he said. - I'd like to hope that, you know, I've done something to make some sort of mark. Even if it's a scratch, I just wanna make sure that I have done something. when I go, I have someone that can say, I, I don't know, I got through a really tough problem in my life and I hope I make something more pleasurable or happy for these people. - If somebody finds your videos way in the future, what do you hope they most remember about you? - Huh. Just that hopefully I, I helped in the way I wanted to with EB research and whatnot and yeah, I hope that's what I get remembered for is, you know, being one of the first people to help. Yeah, I guess I hope they remember that about me, that I tried, I did my best to help. - John Hudson's greatest wish was to end EB and make sure that others don't have to suffer in the way that he did. EB wasn't just something that John Hudson talked about, it's something that he battled each and every day, both for himself and for others. If you've been moved by John Hudson's story and wanna honor him, one way you can do that is by supporting the work being done to end EB. I'll put a link below to an organization that means a lot to John Hudson. I feel like it's impossible to put into words the person that John Hudson was.

He was funny, smart, strong, powerful. He was such a powerful advocate. His willingness to share his story took such great strength and I admire him so much. I'm going to miss him a lot. He has permanently and profoundly impacted me and many others around the world, and that impact will forever be carried forward in the work I do. To John Hudson's family, thank you so much for allowing me to be part of his story. Thank you for trusting me to share his story and anything you guys ever need, whether it be next week or a decade from now, you know I'm here for you. To our community, thank you so much for showing up for John Hudson every time we shared one of his interviews. He would constantly tell me how much it meant to him, the kind comments you sent and your donations to help end EB. It really did pick him up every single time he was featured. And thank you. Is there anything that I haven't asked you in all of our time together that you want people to know? - No, not that I can think of. I honestly, yeah, I really can't think of anything. - Well, that makes me happy. 'Cause that means I asked you everything that will give you the opportunity to share what you needed, and I just wanna tell you that I really value your time and friendship. - I appreciate you just as much, if not more. But we won't get into that because like me and my Aunt Mary will go back and forth. I love you more, well, I love you more than that. And then just recently came to the conclusion of telling her, I love you just as much as you love me. - You reach an agreement. - So, Chris, I appreciate you so much. As much as you appreciate me, I appreciate you just as much. So thank you.