Researchers are close to finding a cure for EB and you can help at bit.ly/HelpCureEB . This is a fundraiser for the EB Research Partnership in John Hudson’s name. If every person who wants to help John Hudson contributes what they can, even just five bucks, it will add up to a large amount. Every dollar helps brilliant researchers and scientists get closer to a cure. I donated $2000 to get things started.
There is a cure with the anecdotal data amd peer reviewed study by 1 of rh3 worlds most renowned doctor with an unprecedented results with 100% cure and solution with hear this 0% side effects. I'm not kidding. Reply to this and I'll tell you where do look and see and get it for yourself if you choose
There is already a cure backed by peer reviewed studies by world renowned physicians with unprecedented results proving 100% cure with hear this 0% side effects with the best most verifiable anecdotal data. Relly to this if you like this information to see for yourself
@@johnatondroid science is the cure.... scientists are working to find a cure. God blessed people with brains and they are called doctors and scientists
I looked him up to see how he and his family are doing and I read some unfortunate news regarding John’s father, John Dilgen. In January of 2023 he was diagnosed with Myelodisplastic Syndrome, a type of cancer in which immature blood cells in the bone marrow do not develop into healthy blood cells. His daughter donated her bone marrow but his health deteriorated despite this and sadly he passed away on July 29. RIP John, you were a great father to your son.
Every time we see him he just gets more beautiful, optimistic, and wise. Some people ask why I watch "this sad stuff" and I just think the sad part is not being able to find the beauty in every story told on this channel
Hey John. I am a double amputee above the knee with artery an vascular disease an have had 7 surgeries in the past 8 years an just thought I knew what pain was!!! You're my new hero little Brother!!! Lots of love to y'all!!!
@@Kriptickhaos Wishful thinking and pipe dreams didn't invent fridges and airplanes, humans did. And the gate keepers before each success were time, money, ingenuity and effort. Not 'miracles', I'm afraid.
@@Kriptickhaos they do but unless there is a way to transfer his consciousness into another vessel, this is the trial of this particular family. and given the fact that the family is still in tact id say they are pulling through
@@overgrownkudzu Yes, I keep wondering if he and other adults with EB ever find that frustrating, because they must find that people quite often don't realise they're an adult, and they likely get spoken to like a child quite frequently. I think I'd find that frustrating. On the other hand, he has a really good sense of perspective since he's dealt with much bigger problems than that, so maybe he shrugs it off.
I'm a medical student, and I like to come to this channel to watch interviews with people who have the conditions we're studying in class. These interviews are invaluable for students--I feel so lucky to be a student while this channel exists. You're training the next generation of healthcare workers here!
This video is painful to watch. I think as a man who lost a leg ABK and the pain I went through, but seeing a kid with a condition like this it, breaks my heart. He’s very smart, brave and tough though I’ll give him that. God bless him!
@@Anonymous-lq2bs hey mate totally agree with you his strong as a bull the pain he is in must be incredible he gives himself pain medication so he must in pain poor fella
Thank you for becoming a medical person. We need more hero's like you. Hopefully find a way to stop this horrible disease. Little dude is a beautiful person, heartbreaking.
How is medical school? I'm interested in medical school and becoming an anesthesiologist when I'm older, and I'm wondering how medical school affects you/how challenging it is/how hard it was to get in. If you're comfortable with answering I'd love to know!
This young man's disease isn't what makes him different. It's his intelligence and SPIRIT that make him different, in every single one of the BEST ways.
Death be not proud is title of a book of true story of a young man who died from something at a young age, inspiring and moving story as well, I think he was a teenager, he died of a brain tumor, published in 1949 by his dad John Gunther.
@@elainebolling505 I am *always* searching for new books to read. I will check this one out! Thank you! Also - If you've never read The Diving Bell and The Butterfly, I strongly encourage you to briefly familiarize yourself with the content and pick it up. It is a *must read*!
God bless this boy. In all his pain, he still realizes his mother's efforts to clothe him, bathe him, cook for him. Gratitude! WOW! We should be so thankful each day!
I’m your typical stoic, straight faced Russian man who rarely shows emotion. Watching this broke every piece of my outer armor. What a brave, handsome and incredibly strong young man. I bow down before you Mr. Hudson. I wish I was half the man you are.
Well said. I wasn't thinking I'd be too affected and just support the young man's struggle without getting emotionally invested, but seeing how brave he is and then watching his father struggling to hold it together was too much. What an amazing young man and family. I have the utmost respect for them.
I think your message,Vlad is quite honestly one of the most heart felt and beautiful I’ve ever read!!!! Thank you for making me believe in humans again. You are one wonderful man 🙏🏼🙏🏼💕🙏🏼🙏🏼
I love that mom. "Do you mind if we talk about this?" People don't normally ask their children for consent to share information about them. It's probably the biggest thing I hate about social media. I love that she respects her child enough to make sure he consents.
The fact that he is an adult, even as a child/teenager, and it took palliative care to be the first people to suggest that he should have a say in how and what kind of treatment he gets, makes me pretty annoyed. He is obviously very loved, well looked after by his family, clearly an asset and full member of the family. Don't get me wrong I am not faulting anyone here. But when the mum says, palliative care is about giving John Hudson the chance to pick his quality of life over some of the smaller decisions but 'not the big ones obviously'. That rubs me up the wrong way. This is an adult, healthcare is a partnership between providers and patients. The big things are the things he should have the most input with. And I understand that is complicated and hard for parents of children who have always been unwell, but you have brought up a beautiful adult. He will ask you for help if he needs it. But these are his decisions to make, about his life.
For how heartbreaking and harrowing John Hudson’s physical state is, he has a healthier mindset than 99% of people I’ve come across. He’s genuinely amazing. I sincerely hope a cure is found for John Hudson and anyone else suffering from EB.
Yeah. It makes me wonder: Is he this way because he’s live with EB or would he be this way without dealing with the disease. My guess would be the later. But he’s obviously a good person. I’ve dealt with adversity before but this… I seriously cannot even imagine what that is like, even for a day.
@@leeartlee915 I can tell you John having EB is definitely why he is the way he is. When you live in chronic pain and have a chronic, progressive condition, your mindset changes completely. You stop seeing things the way others do because you are looking at life through a very unique lens. I don't have EB, but I do have MS that I developed in my early 20's and it's really changed the shape and trajectory of my life. You really do learn to appreciate the little things that people take for granted like the ability to drive a car or even go up a flight of stairs. I love John so much because he doesn't let the 'can'ts' define him.
a close friend lost one of her daughters to EB after 9 years of such bravery, such a terrible genetic condition and 15yrs later Adana is still in all of our minds and hearts, she never cried or let her EB stop her doing anything. one of the most valued memories with my wee buddy was as a 30yr old 6foot man being made to attend dolly tea parties as Adana requested, oh for one more tea party :) Keep fighting John x
Just in case anyone is wondering As of December 27th, 2022. John is still alive. He recently turned 20. He's such a strong willed and bright person. Edit 1: October 18th 2023 From what I was able to find. John seems to be doing well after a recent trip to the hospital. A picture of him eating crab legs in the hospital was posted online as of October 12th of this year. As far as I know John has returned home and his family is currently looking for an in home caregiver/friend for John to have help with things around the home as well as spend time and have fun with.
In 1981 my firstborn son was born with EB and I lost him that year despite fighting with all I had. So rare in Australia, the specialists really had no advice or experience with EB. God Bless you John Hudson, please accept my donation with a heart full of love for you and all the other EB sufferers. You are loved xxxx
You fought for your son. He knows your love. He knows you were there. THAT is what matters. You and the doctors could only do what you could in 1981. Because of your son, they know more today. He had a purpose. A journey. To bring love and be loved. And to help bring more knowledge in the journey of what is EB and how can it be treated and ultimately cured. God Bless.
I have been in the Army, trained MMA, been in fights all my life, but John is more of a warrior than I will ever be . . . I am truly humbled, my thoughts are with you brother
True with fighting you get adrenaline and serotonin (afterwards ) as aids to pain relief and if you do get injured you got decent pain relief and you know the pain is only temporary.......but this lad knows that every single day of his life is gonna be in more pain than you or I have ever experienced and he doesn't give up , he could overdose on his meds or find other ways of ending it all but no he carries on , most of our nerve endings that communicate pain to our brain are in the skin , this lads pain is on another level ......
I love this guy, he’s a freakin ROCKSTAR in my opinion. I’m the biggest wimp on the planet compared to this hero! I wish nothing but a cure for this kid, he deserves our adulation and praise for being the toughest man ever! I love you buddy, and your dad too... he’s a great guy, as well as your mother, she’s awesome!
The Dad broke me, as a parent that must be such a pain to see your child so hurt everyday and not being able to stop it. God bless this family whole heartily
This poor sweetheart. Tremendous courage. A smart, mature, wonderful young man. His mom’s heart must ache seeing her child in such pain. Bless this family.
This sweet boy speaks just like an adult. He seems to have the perfect parents. I feel so terrible for all the pain he's faced, and all he will have to face in the future. He's so much stronger than I am.
Just an FYI he’s 19! ( 16:14 ). I suppose EB or perhaps his medications has prevented proper progress through puberty for him, but he’s clearly much more aware of himself and matured than other young adults. This man’s attitude to life is truly inspirational.
Translation for those of us who need it: "Thank you for fighting and for creating the opportunity for research. You are not only a fighter but also an angel. I wish you all the luck."
We should all be thankful for what we have. But we as humans all have problems. Sweeping them under the rug because someone else has it worse is no way to make use of what good things life has to offer.
@@isthataspider7410 I absolutely agree. A problem is still a problem, no matter how much worse someone elses may be. Dont discredit your own or others problems because of this. There will always be a worse situation but that doesnt mean every issue less severe than that one is invalid
I can't believe he is only 19! Such a inspiration... John, thank you so much for your life! You're inspiring people around the world. A huge hug from Brazil!
Physically he seems younger at first glance because of the way the disease has affected him. But then his maturity and life experience make him seem much older than 19. So it's even more startling.
John Hudson is a straight up badass! Imagine going to war with this disease everyday, in excruciating pain, and still being lucid, smart, and compassionate. That takes a special kind of strength that comes from the soul. Props to his parents for taking such good care of him. I'm glad I found this video, this guy is so brave, it's inspiring - a true warrior. Hang in there, buddy, we're all pulling for you out here in California! 👍👍
Pulling for you in Alberta Canada!! You are amazing, inspiring, and so handsome! Thanks for sharing and SHINING your bravery!! You are a LOVE WARRIOR ❤️
I have some idea what he's going through. I live with Ehlers-Danlos syndrome and am always getting injured. I've had half a dozen injuries in the past year, including a broken ankle for many month, extendor tendon in my foot, injured shoulder, sprained ankle, and currently have trigger finger. It's also a collagen disorder. Living in constant pain is not easy, nor is gaining the understanding of those who don't know or witness what life is like to live with such a condition.
I agree ! It is obviously no walk in the park even though he’s had it his whole life I am sure the pain is excruciating at all times! He’s amazing and such a beautiful soul. 💁🏻☀️💕
John, I do not know if you will see this but I want to say two things. Firstly, I am very sorry for the loss of your Father. I know he was a wonderful man and a great Father. Secondly, you are amazing. Your strength is unbelievable and I am in awe of your beautiful attitude. Bless you John now and always x
The strength of this young boy is absolutely astounding. He may have extreme physical limitations but he can still move mountains with his spirit. Truly inspiring.
I don't know if you'll ever read this John but as someone who's parents did not love them and is a victim of domestic violence your words, struggles and love for people is continually inspiring and has meant a lot to me. I feel seen and encouraged moreso by you then a lot of people.
Stay Strong...U made it thru, n If ur mother didn't love U ...Then Thier is Something Wrong with Her!!...Not You!!!!! Try not to Carry that pain with You, Cause that's what She wants....Self Love is The Best Revenge!!! 💕
This has always encouraged me to know God (Jesus) is near the broken 💔(psalm 34:18). He let his body be broken on a cross to heal our brokeness by reversing the curse that has brought so much brokenness. He stands ready to be a doorway to eternal life (revelation 3:20 - niv Bible)
I feel deeply ashamed for every time I complained. This guy has a lot more courage than I've ever had in my life. I sincerely hope they can heal you , and for the rest of your life be the man you can become.
@@SAOS451316 That's a reassuring sentiment. We have a family friend who is 100 and she says the same to me sometimes - other people's problems are other people's problems (not the same as yours). She is very kind and wise, like John Hudson is.
John may see these comments and without knowing him I can assure you he does not want his life to make you feel ashamed of yours. If anything just try to be a bit more mindful if you feel so inclined, like this young man has had to become. He’s wise beyond his years and that’s what we can draw true inspiration from. He knows himself and he appreciates the ones there for him. Nothing more is required of you. Everyone struggles, we’re all human. ♥️✨🥺
I am a doctor from Turkey who does not currently work. I have full confidence that he will be recovered with the results of the new medical studies. Stay strong kiddo, the modern medicine will be in your service fully very soon. I send many loves from here to him.
Seeing his father kiss his hand was too precious and just shattered my heart. That unconditional love for a child so vulnerable, is so powerful. Those parents are literally angels. 🙏🏾
I've always been struck by the wisdom this boy possesses. He speaks like a person that is much older due to all his sufferings and that makes me sad. We can all learn from this amazing soul.
I am glad he has access to strong painkillers like morphine. I know it doesn't fix the pain, and that it has lots of side effects and has to be taken carefully, but his condition is one of those ones where I am grateful that we do have such drugs.
En parte es cierto cuando dice que es afortunado porque está en un país desarrollado con ayudas y medicamentos que les dan para palear un poco el dolor tienen a sus dos prodenitores los cuales aparte de cuidarlo y amarlo se dan apoyo mutuamente que es muy importante porque te desgasta física como emocionalme y necesitas que si uno está mal el otro lo ayude y entre los dos salen adelante para su hijo, pero cuando estás solo un es muy duro todos los cuidados de tu hijo recaen sobre ti, también no menos impórtate es una paga que les permita tener una mejor calidad de vida algo tan simple como una cama osea un colchon para estar más cómodos una casa en condiciones para su discapacidad una silla de ruegas eléctrica para sean un poco más independientes cosas tan necesarias para su diario vivir! y porque lo digo porque hay muchos que no tienen nada de eso, eso viven en la total pobreza en países pobres sin medios ni medicamentos con un solo padre o madre haciéndose cargo de todo es duro porque necesitas también ese apoyo para esta enfermedad, así que sí, dentro de lo que cabe está en mejores condiciones, ruego a Dios de el conocimiento a los científicos y encuentren una cura a estas enfermedades tan duras, pero miestras tanto que no les falte fuerza y esperanza para seguir ❤🙏🏻
I have watched a lot of genetic conditions as being a genetic student. I’ve never come across a crueler condition than EB… my heart goes out to these strong minded butterfly children and their angelic parents x
Thank you so much for your interest of being a geneticist. As you know there are so many illnesses that haven't even been diagnosed without the genetic coding ect. . Blessings sent to you God Bless you for your important training. 🙏 Peace
Every time I need a reality check I'll come back to this channel. It makes every issue I have ever had look miniscule in comparison and reminds me how lucky I am to be healthy and able-bodied so I can do the things I want to do. That doesn't diminish anyone's issues, but I personally like to be humbled by people much greater than me in mind.
I studied about that disease today in college this kid is actually given me motivation to complete my medical training and help kids with his condition
I hope you continue on with your studies and help many people like Mr. Hudson. I would much rather spend all resources saving the most empathetic and graceful among us than supply the deceitful. Please bring more good to this world.
This is for his Mom: The respect you show your child in this video, was deeply felt. I honestly feel your love as a mother, but not your pain( I mean that No one can really feel the pain unless they have personality experienced even one day in your Sons shoes or yours and your husband) Please know that you, your husband and especially your Son are in my thoughts and prayers. P.S- great job ! You raise a resilient human being that is beautiful, interesting, intelligent, curios, kind, STRONG, and SO SO much more! God bless you
Yeah that was the first thing that really stuck out to me about her. She asks for permission for certain topics. She says how she experience things but clarifies if that’s how he has experienced them. She’s very honest but gives room for their to be a candid discussion. Really great mom and a really amazing son as well.
The moment his dad got choked up and could find the right word and John Hudson not only supplies The correct word ("Heartbreaking" being the word) but offers comfort to his Dad, completely broke me. The amount of empathy in this young man astounds me, his parents are so so lucky to have him as their son. Thoughts, Love, and prayers for his continued health, a cure, and to his family. And with that said .... I'm done crying for the day, so no more SBSK until tomorrow.
I can't imagine being the parent. The amount of strength it takes not to be sad in front of him. Incredible strength and wisdom from John. I hope they find a cure soon.
They had a lot of years to deal with it before he came of an age that it would bother him. But he's so damn smart that he could probably tell. There's comes a certain time when you have to accept what is happening. I think once you hit that acceptance stage it gets easier. You'd be surprised what you can deal with given the right therapy.
If one ever decides they want a child - they should think about this, what if my child will have a disability or mental health problems that will affect them more then the typical person per se. If one is able to say, yes i can handle that, then go for it, because it can happen to anyone.
I'm a 50+-year-old man and I am not ashamed to admit I cried my way through most of this video. I wish all the best for you young man for the rest of your life however long that may be.
You know, I lost my job last week. I've been completely traumatized, stressed, and I lost all hope. Listening to John Hudson talking about his condition, and learning about all that he goes through makes me feel ashamed of myself. How can I complain? I've got my health, and that alone is enough. I pray that a cure is found for you, John Hudson. You're a true inspiration, and an example of how we should lead our lives.
I quit my job to focus on school and now I'm graduating but can't find a job and feel the same way but this video really put everything into perspective for me. I don't have much to give now but when I get my job, i'm going to donate.
Don't beat yourself up. Those are normal reactions to losing a job. But jobs are temporary situations. Another one is right around the corner. Don't give your old job another thought. Focus on living your best life.
Just because someone else has it worse doesn't mean you should be ashamed of yourself struggling in a complicated situation. There's always someone doing worse or better than one, doesn't mean we should feel ashamed.
Man this kid is tough...he deserves every good thing in life, so glad he has such a great family and support system around him. And John we care about you and wish you the best too!!
All people with big muscles and lifting heavy weights need to take a look at this absolute Gladiator of a man and realise, this is what TRUE STRENGTH looks like.
His pain when he sees the pain of his parents shows how selfless this young man is. I pray for his pain to subside and a cure comes soon. I hope John finds an outlet that gives him joy.
He may also feel like people see him as a burden, I hope not though as that would in a way be more emotionally and mentally debilitating than the actual disease. May God bless him and help comfort him in someway .
Most of us would never be able to handle this. I have chronic pain, it’s been part of my life for the last 7 years, this young man is 19! He’s not just in pain, he has so many other issues going on. Bless you beautiful young man. Your an amazing young man, your parents must be so very proud of you. Let’s hope the research continues and break throughs start to happen. All My love to you young man! Live from New Zealand x
Tbh chronic pain is way worse than that, I have a watered down version of what he has won't stay here to explain my condition but it makes my skin really dry and sensitive to touch causing little blisters to pop up, chronic pain was even ranked as one of the worst pains ever. So I'm deff happy I don't have chronic pain
That’s word for word just perfectly put. I also am a sufferer from CRPS and lupus..and the knock on illnesses that go with that. But this young man, is truly remarkable……❤
I think I have experienced the same amount of pain as him in the past 7 years. Different medical issues but unabler chronic pain and can’t work or anything. He’s the only one that inspires me because i feel like I can relate to him the most
I've also had chronic pain, varicose veins, and spider veins at my ankles for about 8 years, I'm 29. I'm grateful to God when I see things like this because I still have all my senses and all my limbs and an amazing quality of life. Most of us are so much more blessed than we realize.
My Boyfriend has EB. Luckily it's the simplex form, which means his inner organs are not involved, but he has severely deformed feet and struggles with walking a lot. Each day he spends 1 hour+ in the bathroom by himself bandaging his new wounds everywhere, from arms to feet. He has the most loving and supporting parents and friends, who helped him to get out of the wheelchair when he was younger. Now being almost 30, he leads a very independent life as a graphic designer, has a lot of emotional intelligence and rich inner life. On the outside, he is a very enthusiastic young man, not any different from "normal" people. When I started dating him, I was very inspired by his braveness in how he deals with EB. But sometimes, when he is drunk, I get a glimpse of the internal self-struggle he faces with his illness. Even though with all the best care from outside, he still must face the issue of self-worth whenever there is something he can't do due to his illness. It is very sad to watch sometimes. I can't imagine the pain his parents and John Hudson's parents went through. I really had to pause this video in the middle taking a break and breath. I come from a family of high pressure, severe emotional abuse, neglect and poverty. My boyfriend has shown me the world and how it feels like to be loved unconditionally. I hope that one day he will understand the value I see in him. We're like the yin and yang towards each other. I am his healthy feet/legs and he is the bandaid to my heart. I wish all the best to John Hudson an his parents. May he become stronger and continue to inspire other people and one day find the love of his life.
To feel loved and valued is every persons wish and it is also what they deserve. Let’s get a breakthrough cure asap, thank you John and production team, for this video.
After seeing this video I must admit I'm ashamed of myself. I'm a 72 year old woman who has the aches and pains that go along with age. Seeing this young man who is so brave in how he is living his life .... even though I don't personally know him I will be praying for him and his family daily.
You should not be ashamed of yourself. You're going trough your path in life like we're all going. You can't be blamed for feeling the pain and aches of life. Life is unfortunately very brutal, but at least we're lucky to be able to enjoy it more than people like John. I get the sentiment of your thoughts tho and I've got to admit I felt the same way like you at first but then I remembered that we can't be blamed for our flaws. We're just human beings. Stay safe ❤
I teared up with this. This boy has taught me to fight on no matter what. I have a physical ailment where I am in pain that made me suicidal. But I truly cannot compare my pain to being in this situation. And who would I be to commit suicide when there are people like this boy who have something more difficult than I yet fight on?.. He is a hero and one of the most courageous people I see on the internet. He has encouraged me not to take my life
this impacted me big time to. ur right. lets all love each other and be grateful for our life. it may seem long but life flashes before u and goes very fast. stay strong. message me if need a friend to talk to. we all can learn from this.
I agree. I am in Chronic pain but I have medical research and medication that helps. The pain does drag you down. Beats you up and wish for death. He has a great support system and a strong mind and will. He's right everyone dies, just depends on how you handle it. Reminds me of children with cancer.
After developing a chronic, potentially fatal illness 3years ago, even though I am in my 60's, I found my perspective of mortality change, especially in regards to pain and deteriation. You have more wisdom than me. Thank you for helping me work to put life and death into a more balanced outlook.
I understand, I had to question mortality at 18 when I was first diagnosed with many chronic illnesses. It messed with my mental health and no one understood… or understands, still. I’m now 30. I’m struggling. But this kid keeps me strong
What an amazing mum. John is very eloquently spoken, and clearly aware of his condition and what it does which is very impressive in itself. But how his mum checks that hes okay to share this stuff is heartwarming.
NOOO and here i was hping at least this boy would at least not have to deal with the pain of losing a parent. John is definitely in another level of bravery . RIP to his father hope they can meet again somewhere!
The things that stand out are how family matters so much in a persons life ...family can take on many forms but it is all we want or need in the end ...each other ...This young man has reached a level of philosophy rarely understood by many who have lived 4 times longer than he has ... His father did a great job raising him and caring for him ... This video caught me off guard and has inspired me to remember what really matters. Thank you to all the family for sharing your love...
No no, he's not just "a normal person" like he humbly states he wants to be treated like, no Sr.. He's way over the average, that's a true warrior right there. "Courage" alone doesn't describe him. Just the way he expresses himself, the way he reaches his hand to his dad for confort from such a physical state is absolutely amazing. I wish John recovers soon.
What a horribly tortured but intelligent soul. His eyes speak volumes of how much pain he has experienced, yet he is incredibly sharp and articulate. I hope he can be cured soon, he deserves a chance at life as a non diseased man.
Mom: "i don't know how you do it." John: "we've done it before." *_we_* He knows his mom is in this with him 100%. What an amazing, loving relationship.
I'm kind of depressed and I was just thinking today how much I would love to give my life to someone who really wants to live it and needs it. I apologize John, some people like me have so much in life but give up for nothing. You are an example of strenght, hope and love. I will pray for the cure to be done really really soon
Dear friend, find your purpose in life, seek God with all your heart , life is beautiful. Give to others in some way, life will take on a different meaning
Don’t compare struggles - we are all human after all, and no matter how big or small our problems are, they are still important. Don’t beat yourself up over it.
I’m a 30 year old male who can’t remember the last time I shed a tear about anything. I randomly saw this and bawled my eyes out. Someone like that doesn’t deserve the hand he was dealt. I wish I could trade him.
My daughter was diagnosed with acute lymphoblastic leukemia when she was 6. We went through years of chemo, hospital stays and horrible days. It almost broke me. I am so impressed by how this family holds it together. You are all heroes in my eyes. I hope they find the cure.
As a disabled adult who also has my mum as my carer, I love how mom and dad check in with John Hudson on what he feels comfortable sharing, and when he wants to talk. It shows really healthy boundaries. Hugs, man. I know what it's like to take top shelf pain meds around the clock, and to just have to wait on diagnostics and cures to be developed when the money just isn't there. I started thinking about my mortality around the same age. While I'm not under palliative, they are really fantastic. It's care focused on not just living, but living well in the time you have. I absolutely hope you can find a clinical trial that works, but in the meantime, palliative will help a lot.
Even if a cure is not found i hope research helps to improve chronically ill and physically disabled ppl's quality of life. Even if it's just a little it would be nice.
@@ChampiVenao Often that's how it ends up working - rather than one big cure it's often a bunch of smaller things that each add some quality of life and some extra years.
"I think I'm very lucky, even given the circumstances." What a truly amazing person. Words don't do him justice. This is also why I don't really feel like making statements along the lines of "no one else can ever complain about their life ever again". Even in his set of circumstances he can acknowledge that so many people around the world are going through so many different kinds of pain whether it's a horrendous disesase or a complete lack of love and support around them, and all of these things should increase our empathy and love for each other. Not diminish them into some sort of contest over who has it the worst. Thank you John, you are truly wise and beautiful.
You put into words what I feel...it doesn't minimize (real) mental illness or other strife. But taking the time to learn others stories is critical for personal growth.
Poor kid, I could not imagine. I feel so helpless just watching this, I could not imagine being the parents. They must be ROCKS. That youngster is one of the strongest kids I've ever seen. I know how hollow words can be sometimes but I mean this from the bottom of my heart, I'm sending thoughts and prayers for you, you guys deserve a break and I pray it comes in the form of a cure quickly. To the parents, you have done and are doing an amazing job raising this young man, what an incredible kid, so grounded and balanced. All the pain and hurt and he's trying to make everyone else feel better. Inspirational on so many levels.
I'm sure somebody will tell him that someone named Jason Fowler is sending his thoughts and prayers to him. Could you imagine how overjoyed he will feel once he gets the news? "Finally!! Some MORE thoughts and prayers!! Yes!!!"
You're a true survivor. Never forgot how strong you are. I know some days are so very hard but you've got this. I wish you more good days ahead. I wish for the cure to quickly arrive or trials to help make your life easier in the meantime. I also hope for even better options for pain relief or even a cure for pain in our future.
It seems like there's a ton of communication about everything between him, his team, and his parents which is so nice to see. I am wishing the very best for him and his future.
"Don't pray for an easy life, but the strength to endure a difficult one." This young man has more strength than most people I know. God bless you, John. Keep fighting the good fight. You will be in my prayers 🙏 ❤️
Joe Varga God is Love. God is manifested in the love, faith, and support of his family and friends. God is the strength this boy has to endure this disease. God is the inspiration we feel seeing this boy endure which teaches us to endure our trials no matter how small. Read this quote from the bible: "Faith is the substance of things hoped for, the evidence of things not seen" Hebrews 11th chapter, first verse. Sometimes God will bless us with a miracle in the form of strength of spirit to endure physical ailments instead of taking it away. See in bible Philippians 4th chapter, 12th verse: "I can do all things through Christ whom strengthens me".
Researchers are close to finding a cure for EB and you can help at bit.ly/HelpCureEB . This is a fundraiser for the EB Research Partnership in John Hudson’s name. If every person who wants to help John Hudson contributes what they can, even just five bucks, it will add up to a large amount. Every dollar helps brilliant researchers and scientists get closer to a cure. I donated $2000 to get things started.
@@johnatondroid Faith isn’t mutually exclusive with science.
@@johnatondroid this is asinine. John is a wonderful person who is fighting hard and believing in a cure. Let’s raise money for that cure.
There is a cure with the anecdotal data amd peer reviewed study by 1 of rh3 worlds most renowned doctor with an unprecedented results with 100% cure and solution with hear this 0% side effects. I'm not kidding. Reply to this and I'll tell you where do look and see and get it for yourself if you choose
There is already a cure backed by peer reviewed studies by world renowned physicians with unprecedented results proving 100% cure with hear this 0% side effects with the best most verifiable anecdotal data. Relly to this if you like this information to see for yourself
@@johnatondroid science is the cure.... scientists are working to find a cure. God blessed people with brains and they are called doctors and scientists
Mom: “Do you mind if I talk about this?”
A natural offer of respect to her son. She’s a really good Mom on multiple levels.
YES!!!
Yes‼️I love that she did that, giving him a sense of like you said respect and also independence in some way for him to decide what he wants to share.
Yeah he's insanely articulate and aware, he must have got it from somewhere!
That touched my heart so much. Just so much love and respect.
Yes, he’s a living reflection of his parents unequivocally positive influence(s). All around good human beings.
This young man has more emotional intelligence and maturity than most adults. Bless him and his family.
Jesus loves you🤍
He's really a special kid
Agreed.
I agree 💯
He is an adult. Correct me if I’m wrong, but I believe he’ll be 20 this year.
When his dad started to cry and his son lifted his fragile arm to his face and dad kissed his hand broke my heart. Unconditional love for sure!!!
🥹💕
That's what got me too! 🥺
I cant....😢😢😢😢
That exact moment of pure tenderness will be with me forever
I wondered if you meant the dad had unconditional love or if you meant the son had unconditional love. But then I realized they both do.
I looked him up to see how he and his family are doing and I read some unfortunate news regarding John’s father, John Dilgen. In January of 2023 he was diagnosed with Myelodisplastic Syndrome, a type of cancer in which immature blood cells in the bone marrow do not develop into healthy blood cells. His daughter donated her bone marrow but his health deteriorated despite this and sadly he passed away on July 29.
RIP John, you were a great father to your son.
Jesus Christ... be grateful for what we have because some people have it very rough
damn...
А как же мальчик? Что с ним? Как он? 😢
💔😭 is sad
Such bad news! RIP
He may say his body is fragile, but his mind and soul are profoundly enduring, he is a beautiful person 💛
Honestly that’s all that matter
I second that!
Yes, that's so true! Our bodies are just the hosts of our souls! And our soul is invincible!
Animo..fuerza¡¡!!🇪🇸🇪🇸🇪🇸🇪🇦🇪🇦😉😉😉
Jesus te ama😉😉🇪🇸🇪🇸🇪🇦🇪🇦🇪🇦❤❤❤❤❤
May God bless you and your family and continue to give you strength. I'm praying for you and for a cure.
Well that was mighty kind of ya
Wow, that's a kind gesture. Huge respect.
Respect
Wow. Thank you man from all of us
Your a good man
Every time we see him he just gets more beautiful, optimistic, and wise. Some people ask why I watch "this sad stuff" and I just think the sad part is not being able to find the beauty in every story told on this channel
❤️❤️❤️☺️
Thank you for that. I fully agree 💙
YES!! Beautifully said!
He is so brave.
Same!
Hey John. I am a double amputee above the knee with artery an vascular disease an have had 7 surgeries in the past 8 years an just thought I knew what pain was!!! You're my new hero little Brother!!! Lots of love to y'all!!!
I hope you to be alright now,stay strong and never give up
Really hope that medical science will improve to a point that he will recover fully someday
At the risk of raining on your parade, I gotta tell you that would be beyond a miracle. The governing technology is centuries away still.
@@Belikel At the risk of raining on your parade, Miracles happen everyday
@@Kriptickhaos Wishful thinking and pipe dreams didn't invent fridges and airplanes, humans did. And the gate keepers before each success were time, money, ingenuity and effort. Not 'miracles', I'm afraid.
@@Kriptickhaos they do but unless there is a way to transfer his consciousness into another vessel, this is the trial of this particular family. and given the fact that the family is still in tact id say they are pulling through
@@Belikel Actually they’re not far off at all from curing this disease. Probably within the next 5 years.
John Hudson is 19, now. What a tremendous inspiration he is.
Is he 19 in this video?
Yeah, at one point he talks about what it's like being 19.
@@AseAleisha yep, people who have EB often don't go through puberty so he sounds and looks younger but he's 19
19 🤯 he looks so young.
@@overgrownkudzu Yes, I keep wondering if he and other adults with EB ever find that frustrating, because they must find that people quite often don't realise they're an adult, and they likely get spoken to like a child quite frequently. I think I'd find that frustrating. On the other hand, he has a really good sense of perspective since he's dealt with much bigger problems than that, so maybe he shrugs it off.
I hope they find a cure soon. This kid deserves the world he’s so bright and smart.
Imagine what he could do, being well, with that positive attitude, strength and heart. ❤️
The cure is God e is the only cure pray for him 🙏
This breaks my heart. A child should have a fair healthy shot at life.
@@samanthaevans9823 what?....
@@samanthaevans9823 say thx to your god for this "gift"
He adores his daddy and has a brave mama.
He seems to have an old soul with a high emotional intelligence.
He’s an Angel on earth.
Unfortunately his dad is an angel. 😞
@@Frosty0762 Oh my heart.
I’d like to think his daddy is waiting on him in eternity… Never sick, sad, hurting, or separated again.
I started crying when the dad was getting choked up and John reached out to comfort him. What a lovely family.
What a loving family.
Yep me too, 53 yo man crying
Tears and compassion I cried too but a wonderful family they are for sure God bless them
@@reubenbruno2250 Do you even know what you're saying? God did this.
Omgeeee me tooo
I'm a medical student, and I like to come to this channel to watch interviews with people who have the conditions we're studying in class. These interviews are invaluable for students--I feel so lucky to be a student while this channel exists. You're training the next generation of healthcare workers here!
I’m currently a medical explorer, and this channel has really had an impact on me.
This video is painful to watch. I think as a man who lost a leg ABK and the pain I went through, but seeing a kid with a condition like this it, breaks my heart. He’s very smart, brave and tough though I’ll give him that. God bless him!
@@Anonymous-lq2bs hey mate totally agree with you his strong as a bull the pain he is in must be incredible he gives himself pain medication so he must in pain poor fella
Thank you for becoming a medical person. We need more hero's like you.
Hopefully find a way to stop this horrible disease.
Little dude is a beautiful person, heartbreaking.
How is medical school? I'm interested in medical school and becoming an anesthesiologist when I'm older, and I'm wondering how medical school affects you/how challenging it is/how hard it was to get in. If you're comfortable with answering I'd love to know!
This young man's disease isn't what makes him different. It's his intelligence and SPIRIT that make him different, in every single one of the BEST ways.
True.
Death be not proud is title of a book of true story of a young man who died from something at a young age, inspiring and moving story as well, I think he was a teenager, he died of a brain tumor, published in 1949 by his dad John Gunther.
@@elainebolling505 I am *always* searching for new books to read. I will check this one out! Thank you!
Also - If you've never read The Diving Bell and The Butterfly, I strongly encourage you to briefly familiarize yourself with the content and pick it up. It is a *must read*!
He seems very wise and resilient praying for him tonight
🙏
God bless this boy. In all his pain, he still realizes his mother's efforts to clothe him, bathe him, cook for him. Gratitude! WOW! We should be so thankful each day!
I’m your typical stoic, straight faced Russian man who rarely shows emotion. Watching this broke every piece of my outer armor. What a brave, handsome and incredibly strong young man. I bow down before you Mr. Hudson. I wish I was half the man you are.
Well said. I wasn't thinking I'd be too affected and just support the young man's struggle without getting emotionally invested, but seeing how brave he is and then watching his father struggling to hold it together was too much. What an amazing young man and family. I have the utmost respect for them.
Beautifully said
I think your message,Vlad is quite honestly one of the most heart felt and beautiful I’ve ever read!!!! Thank you for making me believe in humans again. You are one wonderful man 🙏🏼🙏🏼💕🙏🏼🙏🏼
Same, I am 46 year old bloke sobbing watching this.
Same here, bro, I wish I was hundreth the man he is
I love that mom. "Do you mind if we talk about this?" People don't normally ask their children for consent to share information about them. It's probably the biggest thing I hate about social media. I love that she respects her child enough to make sure he consents.
He's an adult now so legally it's his decision. Although I think a lot of disabled people are not respected like this, even once they're adults.
@@junbh2 This is sadly very true. I am a disabled adult and people often talk to/about me as if I were a young child.
@@junbh2 even when it's legally within the parents' right to decide, they should still check with their kids if it's at all possible
@@overgrownkudzu Yes, I agree.
The fact that he is an adult, even as a child/teenager, and it took palliative care to be the first people to suggest that he should have a say in how and what kind of treatment he gets, makes me pretty annoyed. He is obviously very loved, well looked after by his family, clearly an asset and full member of the family. Don't get me wrong I am not faulting anyone here. But when the mum says, palliative care is about giving John Hudson the chance to pick his quality of life over some of the smaller decisions but 'not the big ones obviously'.
That rubs me up the wrong way. This is an adult, healthcare is a partnership between providers and patients. The big things are the things he should have the most input with. And I understand that is complicated and hard for parents of children who have always been unwell, but you have brought up a beautiful adult. He will ask you for help if he needs it. But these are his decisions to make, about his life.
For how heartbreaking and harrowing John Hudson’s physical state is, he has a healthier mindset than 99% of people I’ve come across. He’s genuinely amazing. I sincerely hope a cure is found for John Hudson and anyone else suffering from EB.
Yeah. It makes me wonder: Is he this way because he’s live with EB or would he be this way without dealing with the disease. My guess would be the later. But he’s obviously a good person. I’ve dealt with adversity before but this… I seriously cannot even imagine what that is like, even for a day.
yes
@@leeartlee915 yes
You've echoed my thoughts exactly. He's got so much fortitude. Best wishes to him and his dear mother and father.
@@leeartlee915 I can tell you John having EB is definitely why he is the way he is. When you live in chronic pain and have a chronic, progressive condition, your mindset changes completely. You stop seeing things the way others do because you are looking at life through a very unique lens. I don't have EB, but I do have MS that I developed in my early 20's and it's really changed the shape and trajectory of my life. You really do learn to appreciate the little things that people take for granted like the ability to drive a car or even go up a flight of stairs. I love John so much because he doesn't let the 'can'ts' define him.
a close friend lost one of her daughters to EB after 9 years of such bravery, such a terrible genetic condition and 15yrs later Adana is still in all of our minds and hearts, she never cried or let her EB stop her doing anything. one of the most valued memories with my wee buddy was as a 30yr old 6foot man being made to attend dolly tea parties as Adana requested, oh for one more tea party :) Keep fighting John x
Just in case anyone is wondering As of December 27th, 2022. John is still alive. He recently turned 20. He's such a strong willed and bright person.
Edit 1: October 18th 2023
From what I was able to find. John seems to be doing well after a recent trip to the hospital. A picture of him eating crab legs in the hospital was posted online as of October 12th of this year. As far as I know John has returned home and his family is currently looking for an in home caregiver/friend for John to have help with things around the home as well as spend time and have fun with.
Thank you for the update 😇😇...
Stay safe brother/sister 👍🏻
He went into Phase III trials!
Thanks for the update. What beautiful human beings. My heart goes out to all of them. ❤
Thank you for the up date. I don't have much money but I do have lots of prayers the cure will be here soon for him and all kids with EB 🙏❤️
Thank you for the updat
In 1981 my firstborn son was born with EB and I lost him that year despite fighting with all I had. So rare in Australia, the specialists really had no advice or experience with EB. God Bless you John Hudson, please accept my donation with a heart full of love for you and all the other EB sufferers. You are loved xxxx
I'm so sorry for your loss. God bless you and your family.
I reckon your son was lucky to have a parent like you even for that briefest of time. Love from WA
@@creepycupcake. Thank you so much.
@@Danoz_die_wreckt thank you so much x
You fought for your son. He knows your love. He knows you were there. THAT is what matters. You and the doctors could only do what you could in 1981. Because of your son, they know more today. He had a purpose. A journey. To bring love and be loved. And to help bring more knowledge in the journey of what is EB and how can it be treated and ultimately cured. God Bless.
This incredible young man shows how ridiculously unfair life is, and how transcendant of it a human spirit can be.
Seriously! His so resilient ❤
Absolutely.
What an absolute sweetheart. And the parents are incredible.
6:26
I have been in the Army, trained MMA, been in fights all my life, but John is more of a warrior than I will ever be . . . I am truly humbled, my thoughts are with you brother
True with fighting you get adrenaline and serotonin (afterwards ) as aids to pain relief and if you do get injured you got decent pain relief and you know the pain is only temporary.......but this lad knows that every single day of his life is gonna be in more pain than you or I have ever experienced and he doesn't give up , he could overdose on his meds or find other ways of ending it all but no he carries on , most of our nerve endings that communicate pain to our brain are in the skin , this lads pain is on another level ......
Perspective! Makes me realize how trivial almost all of my complaints and worries in my life are.
Beautiful, And Yes!!!
Much respect to you too brother
@@sarahdee374 There's always someone worse off than you. Some diseases are worse than death IMO.
I love this guy, he’s a freakin ROCKSTAR in my opinion. I’m the biggest wimp on the planet compared to this hero! I wish nothing but a cure for this kid, he deserves our adulation and praise for being the toughest man ever! I love you buddy, and your dad too... he’s a great guy, as well as your mother, she’s awesome!
Ditto and amen!!
Yes 💗
could of said it better myself,,ditto ♡ stay strong cutie
Yep!
Serious cool guy !!
I pray this kid is given a second chance on life and I hope people realize how good they really have it, make the best of what you’re given.
he's not a kid.. he's an adult
@@AkiDahlia he looked like a kid, didn’t realize he was older. Either way I hold the same sentiment
@@AkiDahlia he’s 12
@@elijahmena2907 he was born in 2002
@@elijahmena2907 not true!!
I love this kid, and his mom asking him if it's okay to talk about his condition says a lot about their relationship
The Dad broke me, as a parent that must be such a pain to see your child so hurt everyday and not being able to stop it. God bless this family whole heartily
As a father I can't even imagine my heart breaks and sending your family lots of love and will try to support.
They love each other, so beautiful ❤
GOD BLESS? You people make me sick
he could’ve prevented it by not dragging the kid into the world in the first place. That would also cure it.
This kid has more strength than 99% of people, I pray for his health to improve.
I will to.🙏💗
This poor sweetheart. Tremendous courage. A smart, mature, wonderful young man. His mom’s heart must ache seeing her child in such pain. Bless this family.
This sweet boy speaks just like an adult. He seems to have the perfect parents. I feel so terrible for all the pain he's faced, and all he will have to face in the future. He's so much stronger than I am.
Just an FYI he’s 19! ( 16:14 ). I suppose EB or perhaps his medications has prevented proper progress through puberty for him, but he’s clearly much more aware of himself and matured than other young adults. This man’s attitude to life is truly inspirational.
He does not feel terrible for his physical infirmities. So why do you?
I agree 👍
@@vioxa8645 His wounds and constant healing take a lot of calories no that certaingly hampered his growth.
He is an adult
For him to call himself lucky because he is loved is so humbling. This family is an inspiration.
Your comment is 100% on point. Thank you
I agree because I was never loved and I think love is the most important thing in the world.
@@GrimBirthday
I pray you will be Loved forever.
We are loved with an Everlasting love.
Tack för att du kämpar och för att du skapar möjlighet till forskning. Du är inte bara en kämpe utan också en ängel. Jag önskar dig all lycka. 🥰
ok
Translation for those of us who need it:
"Thank you for fighting and for creating the opportunity for research. You are not only a fighter but also an angel. I wish you all the luck."
😭thank you
@@sickboy703 ty kevin, they could of spent time translating for a wide audience.
@Parking_lot182 exactly
"I think I'm lucky even given the circumstances".
This kid is so much tougher than I'll ever be. I will say prayers for him.
When you think you have problems and realise you don't at all. He's so inspiring so brave.
🎯
I completely agree .
So so agree...
We should all be thankful for what we have. But we as humans all have problems. Sweeping them under the rug because someone else has it worse is no way to make use of what good things life has to offer.
@@isthataspider7410 I absolutely agree. A problem is still a problem, no matter how much worse someone elses may be. Dont discredit your own or others problems because of this. There will always be a worse situation but that doesnt mean every issue less severe than that one is invalid
I can't believe he is only 19! Such a inspiration... John, thank you so much for your life! You're inspiring people around the world. A huge hug from Brazil!
Jesus loves you🤍
Physically he seems younger at first glance because of the way the disease has affected him. But then his maturity and life experience make him seem much older than 19. So it's even more startling.
Achei que ele tinha uns 14 anos
@@junbh2 yes! My coment refers to his maturity!
oh...he looks much younger
John Hudson is a straight up badass! Imagine going to war with this disease everyday, in excruciating pain, and still being lucid, smart, and compassionate. That takes a special kind of strength that comes from the soul. Props to his parents for taking such good care of him. I'm glad I found this video, this guy is so brave, it's inspiring - a true warrior. Hang in there, buddy, we're all pulling for you out here in California! 👍👍
Pulling for you in Kentucky too, John Hudson! What a breath of fresh air & inspiration you are to us ALL!!! 🙏💗🙏💗🙏💗🙏
Pulling for you in Alberta Canada!! You are amazing, inspiring, and so handsome! Thanks for sharing and SHINING your bravery!! You are a LOVE WARRIOR ❤️
Said well, thank you. From a good hearted person.
I have some idea what he's going through. I live with Ehlers-Danlos syndrome and am always getting injured. I've had half a dozen injuries in the past year, including a broken ankle for many month, extendor tendon in my foot, injured shoulder, sprained ankle, and currently have trigger finger. It's also a collagen disorder.
Living in constant pain is not easy, nor is gaining the understanding of those who don't know or witness what life is like to live with such a condition.
I agree ! It is obviously no walk in the park even though he’s had it his whole life I am sure the pain is excruciating at all times! He’s amazing and such a beautiful soul. 💁🏻☀️💕
John, I do not know if you will see this but I want to say two things. Firstly, I am very sorry for the loss of your Father. I know he was a wonderful man and a great Father. Secondly, you are amazing. Your strength is unbelievable and I am in awe of your beautiful attitude. Bless you John now and always x
The strength of this young boy is absolutely astounding. He may have extreme physical limitations but he can still move mountains with his spirit. Truly inspiring.
THIS family’s love/unity is notable & inspirational; we could learn MUCH from this young boy…🥲🥲❤️❤️👣
He's an angel on Earth
He is not a young boy, he's an adult. Nearly 20 in this video. But he does indeed have such a strong spirit.
I don't know if you'll ever read this John but as someone who's parents did not love them and is a victim of domestic violence your words, struggles and love for people is continually inspiring and has meant a lot to me. I feel seen and encouraged moreso by you then a lot of people.
Stay Strong...U made it thru, n If ur mother didn't love U ...Then Thier is Something Wrong with Her!!...Not You!!!!! Try not to Carry that pain with You, Cause that's what She wants....Self Love is The Best Revenge!!! 💕
You are so worthy of love, respect and compassion. You are incredibly resilient and I'm praying you are blessed with joy every day 💕
This has always encouraged me to know God (Jesus) is near the broken 💔(psalm 34:18). He let his body be broken on a cross to heal our brokeness by reversing the curse that has brought so much brokenness. He stands ready to be a doorway to eternal life (revelation 3:20 - niv Bible)
I feel deeply ashamed for every time I complained. This guy has a lot more courage than I've ever had in my life. I sincerely hope they can heal you , and for the rest of your life be the man you can become.
There is nothing to be ashamed of. There is always someone who has a harder time than you do, but that doesn't make your own problems less important.
Same. Every one on this channel makes me feel like the biggest POS for complaining about anything in my life.
@@SAOS451316 That's a reassuring sentiment. We have a family friend who is 100 and she says the same to me sometimes - other people's problems are other people's problems (not the same as yours). She is very kind and wise, like John Hudson is.
John may see these comments and without knowing him I can assure you he does not want his life to make you feel ashamed of yours. If anything just try to be a bit more mindful if you feel so inclined, like this young man has had to become. He’s wise beyond his years and that’s what we can draw true inspiration from. He knows himself and he appreciates the ones there for him. Nothing more is required of you. Everyone struggles, we’re all human. ♥️✨🥺
Perfectly said...this kid is incredible....no words can say how incredible this kid is... this family is the definition of family.
I am a doctor from Turkey who does not currently work. I have full confidence that he will be recovered with the results of the new medical studies. Stay strong kiddo, the modern medicine will be in your service fully very soon. I send many loves from here to him.
Is there any kind of gene therapy being developed for this that you know of? That would be incredible!
@@francookie9353no. But they are REALLY close to a cure!
ofc you are
@@francookie9353 vyjuvek
Prove it.
Seeing his father kiss his hand was too precious and just shattered my heart. That unconditional love for a child so vulnerable, is so powerful. Those parents are literally angels. 🙏🏾
That broke me.
I lost it watching his dad kiss and rub his hand...this boy is such an old soul, wise beyond his years.
💯💯💯😑💗🐙🙏
Utter sweetness 😇
I so agree. Heartwarming and heartbreaking. But all love.
I've always been struck by the wisdom this boy possesses. He speaks like a person that is much older due to all his sufferings and that makes me sad. We can all learn from this amazing soul.
It might be worth bearing in mind he's nearly twenty years old, then again I concur ...he has great wisdom and maturity.
It’s heartbreaking to know that John has literally been in pain every day of his life. I wish he could experience a life with no pain.
I know 😟
I am glad he has access to strong painkillers like morphine. I know it doesn't fix the pain, and that it has lots of side effects and has to be taken carefully, but his condition is one of those ones where I am grateful that we do have such drugs.
Seeing this I'm ashamed that I get depressed seeing my own situation. You keep going on John
Him talking about being surrounded with love, and that some people not being that fortunate. 😭😭😭
This guy, this family. Bless them. ❤️
He has every reason to be angry and bitter. But he's so gracious and appreciative of the things his parents do for him.
God bless you to.
And he is right, some people don’t.
En parte es cierto cuando dice que es afortunado porque está en un país desarrollado con ayudas y medicamentos que les dan para palear un poco el dolor tienen a sus dos prodenitores los cuales aparte de cuidarlo y amarlo se dan apoyo mutuamente que es muy importante porque te desgasta física como emocionalme y necesitas que si uno está mal el otro lo ayude y entre los dos salen adelante para su hijo, pero cuando estás solo un es muy duro todos los cuidados de tu hijo recaen sobre ti, también no menos impórtate es una paga que les permita tener una mejor calidad de vida algo tan simple como una cama osea un colchon para estar más cómodos una casa en condiciones para su discapacidad una silla de ruegas eléctrica para sean un poco más independientes cosas tan necesarias para su diario vivir! y porque lo digo porque hay muchos que no tienen nada de eso, eso viven en la total pobreza en países pobres sin medios ni medicamentos con un solo padre o madre haciéndose cargo de todo es duro porque necesitas también ese apoyo para esta enfermedad, así que sí, dentro de lo que cabe está en mejores condiciones, ruego a Dios de el conocimiento a los científicos y encuentren una cura a estas enfermedades tan duras, pero miestras tanto que no les falte fuerza y esperanza para seguir ❤🙏🏻
I have watched a lot of genetic conditions as being a genetic student. I’ve never come across a crueler condition than EB… my heart goes out to these strong minded butterfly children and their angelic parents x
Thank you so much for your interest of being a geneticist. As you know there are so many illnesses that haven't even been diagnosed without the genetic coding ect. . Blessings sent to you God Bless you for your important training. 🙏
Peace
If you need any first-hand anecdotes for Ehlers-Danlos syndrome, message me.
Amyotrophic Lateral Sclerosis (ALS). Commonly referred to as Lou Gehrig's disease
But the worst is anything that takes your mind
He's struggling to talk, but still so articulate.
May God Shower John with. his healing Power n Restoration in Jesus mighty name!!!
@@rosemuchina4986 hey Rose 🤍 I invite you to read the Quran 🤍🤍
@@rosemuchina4986 your god did it to him
@Kasey Migliaccio doesn't matter, You don't have to be a christian to belive in God's healing power
@ daraobong isonguyo 😂😂
This young man deserve more to live than most people do.
Every time I need a reality check I'll come back to this channel. It makes every issue I have ever had look miniscule in comparison and reminds me how lucky I am to be healthy and able-bodied so I can do the things I want to do. That doesn't diminish anyone's issues, but I personally like to be humbled by people much greater than me in mind.
What a great reminder and thing to say!
S2=*
That’s exactly what I’m doing, also to build my compassion
Facts
Yes, well said.
I studied about that disease today in college this kid is actually given me motivation to complete my medical training and help kids with his condition
I hope God helps you complete your studies. Please I hope he gets better.
I hope you continue on with your studies and help many people like Mr. Hudson.
I would much rather spend all resources saving the most empathetic and graceful among us than supply the deceitful. Please bring more good to this world.
Good luck with your study and thank you for helping the kids in the future
I pray you can make a difference, my friend. John and all the people like him need it.
This is for his Mom:
The respect you show your child in this video, was deeply felt. I honestly feel your love as a mother, but not your pain( I mean that No one can really feel the pain unless they have personality experienced even one day in your Sons shoes or yours and your husband)
Please know that you, your husband and especially your Son are in my thoughts and prayers.
P.S- great job ! You raise a resilient human being that is beautiful, interesting, intelligent, curios, kind, STRONG, and SO SO much more! God bless you
Yeah that was the first thing that really stuck out to me about her. She asks for permission for certain topics. She says how she experience things but clarifies if that’s how he has experienced them. She’s very honest but gives room for their to be a candid discussion. Really great mom and a really amazing son as well.
I was only half way through the video and was about to comment on the incredible level of respect between him and his Mom!
Yes!! Total respect to you both, that has to be challenging. He's a lovely boy. x
❤️
I thought this too. The respect she has for her son is astounding ✨ totally blew me away
That father was such a gem. John will stay in my heart.
The moment his dad got choked up and could find the right word and John Hudson not only supplies The correct word ("Heartbreaking" being the word) but offers comfort to his Dad, completely broke me. The amount of empathy in this young man astounds me, his parents are so so lucky to have him as their son. Thoughts, Love, and prayers for his continued health, a cure, and to his family. And with that said .... I'm done crying for the day, so no more SBSK until tomorrow.
Your a lovely young man
Keep fighting, John! I have so much respect for you. You're wise beyond your years and an inspiration to SO many people.
100% 😢
Love you PBG, and thank you for supporting this channel. So much respect for John.
he needs to rest life has been rough with him
It’s so good to see you here man i loved your channel
Dang PBG, I didn’t expect you to be here. Nice to see you.
I can't imagine being the parent. The amount of strength it takes not to be sad in front of him. Incredible strength and wisdom from John. I hope they find a cure soon.
They had a lot of years to deal with it before he came of an age that it would bother him. But he's so damn smart that he could probably tell. There's comes a certain time when you have to accept what is happening. I think once you hit that acceptance stage it gets easier. You'd be surprised what you can deal with given the right therapy.
If one ever decides they want a child - they should think about this, what if my child will have a disability or mental health problems that will affect them more then the typical person per se. If one is able to say, yes i can handle that, then go for it, because it can happen to anyone.
@@Dinaciety beautiful message
I'm a 50+-year-old man and I am not ashamed to admit I cried my way through most of this video. I wish all the best for you young man for the rest of your life however long that may be.
You know, I lost my job last week. I've been completely traumatized, stressed, and I lost all hope. Listening to John Hudson talking about his condition, and learning about all that he goes through makes me feel ashamed of myself. How can I complain? I've got my health, and that alone is enough. I pray that a cure is found for you, John Hudson. You're a true inspiration, and an example of how we should lead our lives.
Same here - really choked me up , what an amazing lad
Reiki is demonic ...!!! Prayer to the Triune God & charity & palliative care.
I quit my job to focus on school and now I'm graduating but can't find a job and feel the same way but this video really put everything into perspective for me. I don't have much to give now but when I get my job, i'm going to donate.
Don't beat yourself up. Those are normal reactions to losing a job. But jobs are temporary situations. Another one is right around the corner. Don't give your old job another thought. Focus on living your best life.
Just because someone else has it worse doesn't mean you should be ashamed of yourself struggling in a complicated situation. There's always someone doing worse or better than one, doesn't mean we should feel ashamed.
Man this kid is tough...he deserves every good thing in life, so glad he has such a great family and support system around him. And John we care about you and wish you the best too!!
This is a devastating battle for a child.
@@Jake420 how old is he?
@@bird4218 19
What kind of life expectancy is associated with this disease?
Edit: I just looked it up. Life expectancy is 50. Higher than I thought it would be.
They mention he has started palliative care.
He seems like such a self-aware and articulate guy. You can see the intelligence behind his eyes. I wish him the best.
Ora a Dios Jesucristo
All people with big muscles and lifting heavy weights need to take a look at this absolute Gladiator of a man and realise, this is what TRUE STRENGTH looks like.
You sir have spoken the golden words!
This is sheer strength 💪
Both mental and physical
This guy is a hero...he is literally unbeatable!
That's so cool. I love that you said that
That's so dumb. Both are worthy on their own ways. You don't need to put a whole group of people down
@@giovannebeistline2575 thanks for being sane
I get what you are trying to say but this comment makes you sound like a prick
His pain when he sees the pain of his parents shows how selfless this young man is. I pray for his pain to subside and a cure comes soon. I hope John finds an outlet that gives him joy.
Yes I agree with you and Jesus please heal, help, and be a ever present in this family. What a love he is . God Bless them all.
He may also feel like people see him as a burden, I hope not though as that would in a way be more emotionally and mentally debilitating than the actual disease. May God bless him and help comfort him in someway .
Nineteen years old but speaks with the wisdom of many lifetimes. John is an amazing human being.
Most of us would never be able to handle this. I have chronic pain, it’s been part of my life for the last 7 years, this young man is 19! He’s not just in pain, he has so many other issues going on. Bless you beautiful young man. Your an amazing young man, your parents must be so very proud of you. Let’s hope the research continues and break throughs start to happen. All
My love to you young man! Live from
New Zealand x
Tbh chronic pain is way worse than that, I have a watered down version of what he has won't stay here to explain my condition but it makes my skin really dry and sensitive to touch causing little blisters to pop up, chronic pain was even ranked as one of the worst pains ever. So I'm deff happy I don't have chronic pain
That’s word for word just perfectly put.
I also am a sufferer from CRPS and lupus..and the knock on illnesses that go with that.
But this young man, is truly remarkable……❤
I've had excruciating chronic knee pain for my whole life. It sucks and it's hard to live with
I think I have experienced the same amount of pain as him in the past 7 years. Different medical issues but unabler chronic pain and can’t work or anything. He’s the only one that inspires me because i feel like I can relate to him the most
I've also had chronic pain, varicose veins, and spider veins at my ankles for about 8 years, I'm 29. I'm grateful to God when I see things like this because I still have all my senses and all my limbs and an amazing quality of life. Most of us are so much more blessed than we realize.
John Husson is an angel. He blesses his family with his presence. He is specially loved by God. He is a present for humanity.
Thank you so much.
My Boyfriend has EB. Luckily it's the simplex form, which means his inner organs are not involved,
but he has severely deformed feet and struggles with walking a lot.
Each day he spends 1 hour+ in the bathroom by himself bandaging his new wounds everywhere, from arms to feet.
He has the most loving and supporting parents and friends, who helped him to get out of the wheelchair when he was younger.
Now being almost 30, he leads a very independent life as a graphic designer, has a lot of emotional intelligence and rich inner life.
On the outside, he is a very enthusiastic young man, not any different from "normal" people.
When I started dating him, I was very inspired by his braveness in how he deals with EB.
But sometimes, when he is drunk, I get a glimpse of the internal self-struggle he faces with his illness.
Even though with all the best care from outside, he still must face the issue of self-worth whenever there is something he can't do due to his illness. It is very sad to watch sometimes. I can't imagine the pain his parents and John Hudson's parents went through.
I really had to pause this video in the middle taking a break and breath.
I come from a family of high pressure, severe emotional abuse, neglect and poverty.
My boyfriend has shown me the world and how it feels like to be loved unconditionally.
I hope that one day he will understand the value I see in him.
We're like the yin and yang towards each other. I am his healthy feet/legs and he is the bandaid to my heart.
I wish all the best to John Hudson an his parents.
May he become stronger and continue to inspire other people and one day find the love of his life.
I’m sorry and I hope that everything goes well my friend
ur a great gal good for u
Damn this was moving, thanks for sharing
You are a good person. I wish you a happy and healthy life with your boyfriend.
To feel loved and valued is every persons wish and it is also what they deserve. Let’s get a breakthrough cure asap, thank you John and production team, for this video.
This channel is so important. None of us would know about people like John without it. Thank you.
AMEN
Some people would. My great nephew has this disease. He is a year old. It has been super rough on my nephew and his wife😟 My nephew is an RN.
Even if you don't know anyone personally with this disease, there are a lot of documentaries and interviews.
I agree - I get a lot from learning about the people featured on this channel.
Exactly.
This kid is so smart. I pray he can live long enough to get the cure. I could see him being a doctor someday.
One of the strongest, actually the strongest and bravest kid I ever saw!!m
After seeing this video I must admit I'm ashamed of myself. I'm a 72 year old woman who has the aches and pains that go along with age. Seeing this young man who is so brave in how he is living his life .... even though I don't personally know him I will be praying for him and his family daily.
Don't feel ashamed, sweetheart!❤
What an incredible young man! Does anyone know how he is doing now?
What are you ashamed for?
Me too.
You should not be ashamed of yourself. You're going trough your path in life like we're all going. You can't be blamed for feeling the pain and aches of life. Life is unfortunately very brutal, but at least we're lucky to be able to enjoy it more than people like John. I get the sentiment of your thoughts tho and I've got to admit I felt the same way like you at first but then I remembered that we can't be blamed for our flaws. We're just human beings.
Stay safe ❤
I teared up with this. This boy has taught me to fight on no matter what. I have a physical ailment where I am in pain that made me suicidal. But I truly cannot compare my pain to being in this situation. And who would I be to commit suicide when there are people like this boy who have something more difficult than I yet fight on?.. He is a hero and one of the most courageous people I see on the internet. He has encouraged me not to take my life
this impacted me big time to. ur right. lets all love each other and be grateful for our life. it may seem long but life flashes before u and goes very fast. stay strong. message me if need a friend to talk to. we all can learn from this.
Agreed. I had my right leg amputated but it's nothing compared to John
truueee!!
I agree. I am in Chronic pain but I have medical research and medication that helps.
The pain does drag you down.
Beats you up and wish for death.
He has a great support
system and a strong mind and will.
He's right everyone dies, just depends on how you handle it.
Reminds me of children with cancer.
I hope he and his family see your comment. Blessings to you for staying strong and staying with us.
After developing a chronic, potentially fatal illness 3years ago, even though I am in my 60's, I found my perspective of mortality change, especially in regards to pain and deteriation. You have more wisdom than me. Thank you for helping me work to put life and death into a more balanced outlook.
Dear Kathy please know that I am praying for you and also in my 60's and know the feeling. Godspeed 🙏
Peace
⚘
hope you aRE well KATHY
I understand, I had to question mortality at 18 when I was first diagnosed with many chronic illnesses. It messed with my mental health and no one understood… or understands, still. I’m now 30. I’m struggling. But this kid keeps me strong
Get well soon!!❤️✨🙏🏽
What an amazing mum.
John is very eloquently spoken, and clearly aware of his condition and what it does which is very impressive in itself.
But how his mum checks that hes okay to share this stuff is heartwarming.
Unfortunately the father has passed away. Reading about him- he seemed to be tremendous man that lost a hard fought battle with cancer.
RIP
😭😭😭 RIP, he was SUCH a good father from watching this video. What a sweet man. I’m sure he is greatly missed…
Sending tons of love to John and his family! Rest in Peace
NOOO and here i was hping at least this boy would at least not have to deal with the pain of losing a parent. John is definitely in another level of bravery . RIP to his father hope they can meet again somewhere!
Gosh people don’t know how to use the crying emoji
The things that stand out are how family matters so much in a persons life ...family can take on many forms but it is all we want or need in the end ...each other ...This young man has reached a level of philosophy rarely understood by many who have lived 4 times longer than he has ...
His father did a great job raising him and caring for him ...
This video caught me off guard and has inspired me to remember what really matters. Thank you to all the family for sharing your love...
I hope John's days are filled with whatever makes him happiest. He's a great person.
No no, he's not just "a normal person" like he humbly states he wants to be treated like, no Sr.. He's way over the average, that's a true warrior right there. "Courage" alone doesn't describe him. Just the way he expresses himself, the way he reaches his hand to his dad for confort from such a physical state is absolutely amazing. I wish John recovers soon.
completely agree
What a horribly tortured but intelligent soul. His eyes speak volumes of how much pain he has experienced, yet he is incredibly sharp and articulate. I hope he can be cured soon, he deserves a chance at life as a non diseased man.
Please give us an update. John is one of the strongest people I've ever seen. Amazing soul
He passed away, sadly
@@dieeine8114 no he is still alive.
@@lotuslabradorite5539 oh then I´ve mistaken him for another boy who looked exactly like him. Sorry---
@@dieeine8114 prob thinking of Marky Jaquez
@@dieeine8114 yes, i know who you are referring too
Mom: "i don't know how you do it."
John: "we've done it before."
*_we_*
He knows his mom is in this with him 100%. What an amazing, loving relationship.
I'm kind of depressed and I was just thinking today how much I would love to give my life to someone who really wants to live it and needs it. I apologize John, some people like me have so much in life but give up for nothing. You are an example of strenght, hope and love. I will pray for the cure to be done really really soon
I can relate to that.
so sad .. u r beautiful dont be like that … 😎
Dear friend, find your purpose in life, seek God with all your heart , life is beautiful. Give to others in some way, life will take on a different meaning
Don’t compare struggles - we are all human after all, and no matter how big or small our problems are, they are still important. Don’t beat yourself up over it.
you are here for a reason! every struggle is valid and you will make it through xoxo
No words can describe what this courageous lad goes through every day. When you think you've got it tough, think back to young John Hudson
You're Right! When you think you got it bad...someone else's situation is Worse...Something to THINK about...
Why do woman always use labels like courageous and brave to describe everything? It's silly lol
Ah man……true that. 🙏
He is a living saint. Kid..you are awesome. Man, I need to be very appreciative of my health and not complain. You are tough.
This kid is so incredibly humble, wise, positive, and kind. So glad they all have each other. Beautiful family.
hes actually 20! born in 2002. he was first interviewed in 2017, at 15.
@@draken1058
Petty much? 🙄
@@SUPERSPAZD How are they being petty?
I’m a 30 year old male who can’t remember the last time I shed a tear about anything. I randomly saw this and bawled my eyes out. Someone like that doesn’t deserve the hand he was dealt. I wish I could trade him.
You're a kind soul. If only we could all shoulder each other's burdens a little more.
John is more of an adult than most people. He is an inspiration. His parents have done a wonderful job.
That's what happens when you experience real world faster than others not like current snowflake community
and most kids his age are like immature
Thats because he IS an adult. He's 19 but just looks younger because of his condition.
But i do agree, he is still very strong and intelligent
@@brzydkionjest bigot
@@hazelthenut5940 oh, thank you for telling. me that because i didnt know and sorry for the mistake
John, you have helped me more than you can know. I'm thinking about you and praying for you every day. You are my hero!!!
He’s so well spoken. He truly has a wonderful family.
And a beautiful soul
Yes! He is so great at expressing himself. He is so remarkable.
This kid is awesome. He doesn't complain.. but realizes how much love surrounds him. What a cool guy.
You have a wonderful soul young man.
My daughter was diagnosed with acute lymphoblastic leukemia when she was 6. We went through years of chemo, hospital stays and horrible days. It almost broke me. I am so impressed by how this family holds it together. You are all heroes in my eyes. I hope they find the cure.
I will pray for your daughters health,bless all of you.
praying for you and your daughter @pinkopal1195 how is she now
@@fierytales1 Thank you. She is in remission.
Pinkopal1195 you're welcome. Praise God she's in remission he heals all diseases. May his peace be upon you and your family
@@pinkopal1195 👍🏻🌿🌺💓
I feel so humbled watching this what a wonderful person it put living normally into perspective. How lucky I am to have a normal life.
As a disabled adult who also has my mum as my carer, I love how mom and dad check in with John Hudson on what he feels comfortable sharing, and when he wants to talk. It shows really healthy boundaries.
Hugs, man. I know what it's like to take top shelf pain meds around the clock, and to just have to wait on diagnostics and cures to be developed when the money just isn't there. I started thinking about my mortality around the same age.
While I'm not under palliative, they are really fantastic. It's care focused on not just living, but living well in the time you have. I absolutely hope you can find a clinical trial that works, but in the meantime, palliative will help a lot.
Even if a cure is not found i hope research helps to improve chronically ill and physically disabled ppl's quality of life. Even if it's just a little it would be nice.
@@ChampiVenao Often that's how it ends up working - rather than one big cure it's often a bunch of smaller things that each add some quality of life and some extra years.
"I think I'm very lucky, even given the circumstances."
What a truly amazing person. Words don't do him justice.
This is also why I don't really feel like making statements along the lines of "no one else can ever complain about their life ever again". Even in his set of circumstances he can acknowledge that so many people around the world are going through so many different kinds of pain whether it's a horrendous disesase or a complete lack of love and support around them, and all of these things should increase our empathy and love for each other. Not diminish them into some sort of contest over who has it the worst. Thank you John, you are truly wise and beautiful.
I'm totally agree with you with: no one else can ever complain about their life ever again 🥰🙂🤗👏🏻👏🏻👏🏻👏🏻💖 thanks !
I totally agree with you. What an awesome human being! Wise beyond his years! I pray for the Lord to heal him. 🙏❤😪
You put into words what I feel...it doesn't minimize (real) mental illness or other strife. But taking the time to learn others stories is critical for personal growth.
That last paragraph...thank you.
Poor kid, I could not imagine. I feel so helpless just watching this, I could not imagine being the parents. They must be ROCKS. That youngster is one of the strongest kids I've ever seen. I know how hollow words can be sometimes but I mean this from the bottom of my heart, I'm sending thoughts and prayers for you, you guys deserve a break and I pray it comes in the form of a cure quickly. To the parents, you have done and are doing an amazing job raising this young man, what an incredible kid, so grounded and balanced. All the pain and hurt and he's trying to make everyone else feel better. Inspirational on so many levels.
Thank You; perfectly said. ❤👍
I'm sure somebody will tell him that someone named Jason Fowler is sending his thoughts and prayers to him. Could you imagine how overjoyed he will feel once he gets the news?
"Finally!! Some MORE thoughts and prayers!! Yes!!!"
You're a true survivor. Never forgot how strong you are. I know some days are so very hard but you've got this. I wish you more good days ahead. I wish for the cure to quickly arrive or trials to help make your life easier in the meantime. I also hope for even better options for pain relief or even a cure for pain in our future.
It seems like there's a ton of communication about everything between him, his team, and his parents which is so nice to see. I am wishing the very best for him and his future.
Holy Sheesh, John is strong!
"Don't pray for an easy life, but the strength to endure a difficult one." This young man has more strength than most people I know. God bless you, John. Keep fighting the good fight. You will be in my prayers 🙏 ❤️
What a beautiful quote.
❤️🌷🌈☀️🙏 Thank you to this beautiful family for sharing your journey. Sending love and light.
Why isn't God helping this young man?
Joe Varga God is Love. God is manifested in the love, faith, and support of his family and friends. God is the strength this boy has to endure this disease. God is the inspiration we feel seeing this boy endure which teaches us to endure our trials no matter how small. Read this quote from the bible: "Faith is the substance of things hoped for, the evidence of things not seen" Hebrews 11th chapter, first verse. Sometimes God will bless us with a miracle in the form of strength of spirit to endure physical ailments instead of taking it away. See in bible Philippians 4th chapter, 12th verse: "I can do all things through Christ whom strengthens me".
@@joevarga5982 God doesn't care enough to do anything. If god is even real these type of stories makes me think there is no god.
Thank you for continuing to do your important work!