John Hudson’s Fight for Survival (Living with a Progressive Disease While a Cure is Close)
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- Опубліковано 13 кві 2022
- John Hudson is diagnosed with epidermolysis bullosa and has been a beloved member of our community since he was first interviewed five years ago. His disease has quickly progressed, leading John to start palliative care. As his body feels the impact of this devastating disease, there is a real possibility that there will soon be a cure for EB. John is fighting to remain alive so he can experience a cure and be with his family for as long as possible.
Help Cure EB at bit.ly/HelpCureEB
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
Nice bro
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.
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...
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 ❤
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.
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!
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 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.
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😉😉🇪🇸🇪🇸🇪🇦🇪🇦🇪🇦❤❤❤❤❤
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.
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
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
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
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
so extremely tragic, you can see the constant pain in this kids eyes... he has never lived a single second of his life not in pain and it shows. So, so saddening, and it reminds me to appreciate what i have
When you’re sleeping you don’t feel pain
@@blackqweenmars you do actually you just feel it subconsciously
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.
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 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"
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!
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
Breaks my heart to see such a beautiful kid go through this. What an incredibly polite, good natured young man considering what he’s dealing with. Hoping all the best for you trooper.
He's almost 20
@@Wee_Voo Exactly, still a kid.
@@WaytogoEinstein He's an adult
@@WaytogoEinstein past 18
@@Wee_Voo He's still a kid compared to most people.
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.
I love this kid, and his mom asking him if it's okay to talk about his condition says a lot about their relationship
"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.
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. 💁🏻☀️💕
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 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.
If anyone is wondering, as of October 2023, he’s still alive. :)
How do you know?
He died recently. Its a sad situation
@@irshviralvideodid he really???,
@@irshviralvideono, he is alive. His father died but not his son. Maybe get your facts right.
@@_ofthenight_just a pathetic troll. He's alive. His dad is dead.
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 !!
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
🙏
When i wanna remember what mental strength looks like, i will come back to see John.
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.
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 incredible young man shows how ridiculously unfair life is, and how transcendant of it a human spirit can be.
Seriously! His so resilient ❤
Absolutely.
Seeing this I'm ashamed that I get depressed seeing my own situation. You keep going on John
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.
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.
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 hope the cure is found soon, no one deserves this.
What an absolute sweetheart. And the parents are incredible.
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!!
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.
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.
Heavenly father please bless this child
❤
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.
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
One of the strongest, actually the strongest and bravest kid I ever saw!!m
This young man deserve more to live than most people do.
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.
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 Maybe he doesn't want to be "Showered with healing power & restoration in Jesus mighty name". Maybe they aren't Christian or maybe they aren't religious at all. Maybe they're even Atheist, you never know.
@@rosemuchina4986 your god did it to him
@@kaseymigliaccio2519 doesn't matter, You don't have to be a christian to belive in God's healing power
That father was such a gem. John will stay in my heart.
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!!!
This kid has more strength than 99% of people, I pray for his health to improve.
I will to.🙏💗
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.
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
He is not from this world...
He is a super human in my book!
What an incredible and intelligent young man 😮
I honestly have no words to describe how incredible he is on all levels!
Much respect sir!
He is a living testimony that we have absolutely nothing to complain about!
Much love ❤️
Hang in there brother...your reward is on its way!...you deserve the very best that life has to offer...and you will get it!
He deserves to live a long life with no pain or illness. He is so mature
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
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.
John, has anyone ever told you that you look like Superman? Considering how you are living your life, enduring so much pain, but taking it like a trooper, you are like Superman!
Poor kid 😞 he looks tired and in pain and it breaks my heart God please help this guy 🙏🏻😢
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
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.
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.
This kid is so amazing. He is kinder, smarter, and more respectful than most adults. It’s also crazy how well he deals with his condition. God bless him.
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
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)
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.
This young man has the soul of a warrior!
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 don't think most of us appreciate how lucky we really are. Keep on keepin' on, John.
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.
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
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.
God bless them. He is such a good guy and what a beautiful and caring family. Please join me in prayer for this young man and his family. May God bless them abundantly.
I pray God comfort and strengthen him 🙏♥️♥️♥️♥️
I hope John's days are filled with whatever makes him happiest. He's a great person.
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.
I pray this young man gets the cure he deserves. I know there is so much negative stigma with opiates but people tend to forget that they are life saving medications for people in this type of pain and just bc some people abuse these medications it does not mean they are evil. I feel we need to take more responsibility for our actions bc it’s taking the medication away from people that truly need it to live a somewhat normal life.
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.
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
He is a very intelligent boy. He is a nice person and he a good looking boy also. I hope and pray for him. Best wishes John.
he is so well spoken and mature. what a great kid:(
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.
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 .
This guy has incredible strength of mind. Thank you for posting this video, thank you for sharing your life with us, never give up, never get down... ♥️
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.
This kid is so smart. I pray he can live long enough to get the cure. I could see him being a doctor someday.
The bravery and pain some people go through is unfathomable. Stay strong John :)
I pray this young man will be able to recover with these new treatments.
he sadly passed along time ago
@jasminebarker8724 his father passed who was also named John. 😔
@@jasminebarker8724he’s still alive, it was his father that passed from cancer
I don't know how can anybody utter words "Life Is Beautiful" after seeing this. My life is completely changed.
I just want John to know:
We see you, We hear you and We Feel you .
Maybe it's hard to believe, but we do
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
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.
Wow what an absolute inspiration. Such an articulate and emotionally intelligent young man. Super parents, very sorry to hear Dad had passed.
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.
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
God have mercy on this kid
Nice to meet you John... your quite a strong young man how you deal with your condition... You seem so smart and well spoken... I'm really sorry you have to go through what you have to go through and I hope they can find something to help give you relief and possibly a cure... I have so much respect your strength and positive attitude... My life is so much fuller for meeting you. I pray that you obtain everything you dream of in life... God Bless you and carry on...
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.
He is such a smart person, and seeing him handle his struggles in such a mature way is so inspiring to me. I hope they find the cure soon.