Man With Fatal Skin Condition Plans His Own Funeral | BAFTA-Winning Documentary | Real Stories

[@BiglyChungus]

“Constant wanking just doesnt go well with the condition” that man was a comedic genius. RIP

[@pinkpanther8574]

😋 100% Man right there. Oh so many people could use Jonnys tounge in cheek appreciation. 😇 yes, includes me.

[@donnayork816]

Lol. He had a wicked witty personality despite all his pain.Seemed like a great guy and what a wonderful mother and family. The mother is a saint, what pain in her heart to have to watch her son suffer all those years and take care of his every need.

[@booboobearsugarbear9109]

She really broke at the end when they played his favorite song at the funeral 😞😞😞 I feel so bad for her and Johnny's family!!! Johnny shouldn't of died :'( he shouldn't of went through that...he has the best personality any person could have...his determination and strong Will just blows me away...I wish I could've met him 😞😪

[@pinkpanther8574]

@@booboobearsugarbear9109 Aww HUGGLES Sister. He was here to teach, no doubt . He had ALOT to say and it was granted that he could. Xoxo

[@pinkpanther8574]

@@donnayork816 I shed tears SO MUCH wen changing his back bandages 😔 Ive got pesticide Roundup ?boils?? Scab and ITCH. 1st shower and i wentt to my knees. Thank you Miss Donna for hearing me.

[@CourtneyMarie-ep6ez]

Wait....so he put a symbol on his coffin that doesn’t have anything to do with anything just to confuse people?? This man was a GENIUS!!

[@InedibleMuffin]

Not only that, he specially asked for the *Heinz baked beans label*. On his coffin. He's amazing.

[@liztrainer895]

CourtneyMarie 6661 Never knew u could design ur own coffin.

[@drobles394]

fun guy!

[@greenearthblueskies8556]

He definitively got the last laugh 😂

[@pandachan3223]

@@liztrainer895 you can, but usually people don't know when they will die, and when they do, they don't want to think about it

[@marypeters4576]

Here it is 2020 and I'm just hearing about this and watching it for the first time. What an amazing man Jonny was. R.I.P. JONNY.. who else is just watching this for the first time in 2020?

[@raemeewentzel9356]

I am,im 30 minutes in,and im crying my ars off.what an awesome amazing person he was,right?

[@kx80moto]

Me too ouff so toutching

[@amoywilliams1828]

It give me tears RIP Jonny

[@kujju18]

Mary Peters yup just started watching.

[@robynbyrne6970]

Im actually just sitting here watching it now. March 13, 2020. What an amazing man Johnny was, I absolutely love his personality. R.I.P Johnny Fly with the angels now

[@ChAnElLe1290]

Eighteen years after his death Jonny has made me smile, laugh, and now cry. What a devastating loss. I hope you're in peace now, Jonny.

[@ralphhoutz2285]

Amen.

[@sosigakaweinerman869]

Amen.

[@bastian6173]

He's not really gone. His spirit is living on.

[@labellavita23]

@@bastian6173 atats

[@janainaquadrosquadroscomde3672]

Jesus Christ is powerful Peace Holy and Saviour in World amen 🙏💗is Really

[@DanielThomas808]

I could never in a million years have the strength that he had.

[@darwinwilliams485]

Same here 😥, and I complaint about my life.

[@werearethedreamteam3724]

I don't think no one would want to live like a f that's a freackin nightmare man

[@bricktea3645]

U would if u lived through the pain that he had

[@rbivgq1734]

really humbles you huh, does to me, all the things we take for granted like our health, i like to think im strong but i dont think i am.

[@oussematoussli8085]

such a great comment " Daniel Thomas " thanks so much that's the greatest phrase in all man kind through all the history except when Logan paul filmed a body or when Ricegum promoted a false money baiting game thanks for existing i really started believing that the reason god created us just so you can create this comment ! now after you wrote this comment. We can peacefully die and god can finally kill us all

[@debrah4241]

His mother deserves "the best nurse" award. He survived so long without dying from a wound infection. RIP Johnny.

[@crazyasian68]

@Severin Dahl ooo edgy

[@deby7821]

@Severin Dahl Hate women much ???

[@JackiHamm]

Severin Dahl Be a better person.

[@Shamariah2011]

Worse, she had to man up so to speak. Because not only was he in pain buthe washerson! Imagine how it felt for him thatjust to cry hurt too much.

[@moniquenovak-nichelson9769]

Right 36 years!!!

[@GeeklingNo1]

Dude just sat there watching his coffin being made and designing the whole thing like a boss!

[@lillylove3508]

Normal'sWayOverrated My great grand aunt did the same, but with the headstone on the grave as well. She thought she was poor, but as we started to take over her bills and bank accounts, we discovered she was a millionaire. She was thrilled and went bananas with the grave stone, picking the most beautiful and expensive stone, inscriptions, lanterns etc. From living a life in poverty, she got buried as a royal. The fun thing is that after her gravestone was put up, (she is buried at the most posh graveyard) everyone copied her stone and style, so now everyone has the exact copy. I bet she is laughing out loud up there in heaven, loving that she started a trend. ❤️

[@almostskater3210]

@@lillylove3508 How do you not know you have a million dollars?

[@josefine9163]

Billsama Bin Clinten I was thinking the same.

[@johnnyallenshaneprater4870]

@@lillylove3508 wait what? She thought she was poor, and didnt have any idea she was a millionaire?? Let me guess then everyone stood up and clapped after all that happened

[@jamesfranxx6151]

@@lillylove3508 well it must be true i seen it on the internet and who would lie on the internet

[@jntwst]

I first saw this documentary a few years ago and watch it now and then for gratitude and perspective. I have a blistering skin condition called Porphyria Cutania Tarda that I acquired after receiving massive doses of antibiotics to fight MRSA. The antibiotics damaged my liver to the point that my sun-exposed skin is very fragile and often becomes a sore or lesion if I’ve banged it or somehow injured myself. It's ugly and embarrassing, and especially painful when people stare. When I get to the point of feeling sorry for myself I have to remember that there are people who have more suffering and hardship. Jonny Kennedy has shown me through his courage and humor that I can pick myself up and move forward. God bless Jonny and his family for participating in this document to bring about EB awareness and help all of us who are going through something that there is so much to be grateful for even in the darkest situations. Rest in Peace, Jonny 🩵🕊️✝️

[@kookootrix1978]

Wishing you the best! 💙

[@brotherpigeons8395]

He's savage as hell. Looked death in the face and spat in its eye.

[@frankgarofalo7722]

Chicken Tenders aye I believe he would.

[@batheandrelaxinmyshit6344]

Gavin Macpherson-Smith please explain what you mean by beej. Is beej another word for beetroot?

[@MsAdams1053]

If he said wanking alone was painful, what makes you think a BJ wouldn't be?

[@manza19cm]

Sanjyukyu Hime skin would come off in her mouth. Your welcome for the visual.

[@AstroMartine]

he never went through puberty though, which I guess means no physical desires?

[@PriscillaJericho]

"Cancer doesn't worry me, it's just another bloody nuisance" He had an amazing outlook. We can all learn from him.

[@multicolor8476]

I've had a difficult life, nothing anywhere near what this man suffered. But what I want to say is I know what he means about cancer being just another nuisance. Last year, when I heard the diagnosis of breast cancer, it wasn't the cancer word that resonated with me. My concern was how much pain, discomfort, inconvenience should I expect and how to minimize the nuisance. It was somehow weirdly satisfying to know that someone else knew that sentiment. His bravery, his resilience, is inspiring.

[@PriscillaJericho]

@@multicolor8476 I'm so sorry you have had to go through this. I know it's comforting when you find someone who relates to your situation. Are you doing better now? I hope you are ok. I will keep you in my prayers 🙏❤️

[@multicolor8476]

@@PriscillaJericho yes, I am better. Not 100% but enjoying life. Thank you.

[@evalevy2909]

I can't say I know his specific experience but I do have a slew of piling health issues and after a while you just assume you'll come down with things cuz why not add it to the collection.

[@theresaromeo5484]

Yes learn when to humanely end suffering. There are medications to make that person never hurt again. What's wrong with us when we call that suffering life.

[@yaboi7179]

The fact he joked and humored with his situation, but then cried to his mother about it. It broke me man. I can relate to that and I know how it feels. Smiling through the pain and laughing at fear. He deserved better, he was so strong and I'm glad he was able to live life to his fullest.

[@findyourpixiedusteveryday6344]

just a big virtual hug for you! feeling the same here... and at the same time, watching this, makes me count all my blessings another time and feel really really grateful for all my flaws, mistakes and shortcomings ...

[@constanzerodriguezalvarez9477]

I'm agree. What a lovely soul and man. R. I. P. Jonny 🌠

[@jamsulit2111]

"Smiling through the pain and laughing at fear"... Man, I cannot express how much I was touched by these words of yours.

[@robynbyrne6970]

Me too, he had just an amazing personality! R.I.P Johnny

[@Airmen1939]

Man was a true soilder

[@jackiejamieson7884]

I have cancer and was given a year 3 months ago but I'm fighting with chemotherapy and radiation so far.

[@EK-dt4cp]

jackie Jamieson sending you lots of love ❤️

[@mercyr6105]

❤

[@Gleyi07]

My dad was diagnosed with cancer at age 22 and was given 6 months left to live. He just turned 62 🙏🏻 Thank God❤️ My father says he healed him self by staying positive and believing he would get better. Attitude is everything. Sending you lots of love❤️🙏🏻

[@jackiejamieson7884]

@@Gleyi07 thanks so much I've been trying to stay positive I also believe our mental state plays a very large roll in our ability to heal. I'm glad to hear about your dad I lost my father to cancer when I was 18 and he was my best friend. I appreciate you taking the time to comment that every single positive message or reply I get actually means so much to me so ty again!!❤

[@robertbunton6394]

How are you doing now sweetie

[@PerturbedPeacock]

He lived 36yrs in a pain wretched body and still accomplished so much. Sixteen years later and his memory lives on as strong as he did. A story like Johnny's will humble you & remind you that when you think you've got it bad you need to think again.

[@BootsORiley]

your last sentence - yes precisely! my wife asked me why i'm watching such a sad, drab documentary. i told her straight away that it's making me appreciate what i have.

[@BootsORiley]

M H what would be the proper way to feel while watching this then

[@BootsORiley]

M H I hear ya, M. Thanks for taking the time out of your day to share this viewpoint. I really hope you’re doing well

[@PerturbedPeacock]

@M H Not one person said anything the way you made it sound. I'm sorry that you have to deal with what you have going on. That's called compassion, not oh woe is you, I pity you kind of thing. I too deal with severe health issues so when I see someone that has or had something worse than myself it's a reminder that I don't have it as bad as I think I do. You really shouldn't take what ppl say out of context!!!

[@Secret-Serenity]

@M H I don't think she was implying it's good for "normal" folks to say thank God I don't have that mess and then go about their day. I think it was more directed at people who are depressed or feeling sorry for themselves or just being negative and telling them to try and snap out of it and realize how good they actually have it, many people have it so much worse and they need to appreciate what they do have. You could use anyone's life experience who has struggled, not just the disabled, as an inspirational story to motivate people to see the positives in their lives and that is what she meant, not what you're saying. Even though I suffer now in life, his story reminds me that I need to be brave and keep pushing forward because he had it so much worse than I do and he was brave. I wish I had gotten to meet him, what a wonderful inspirational man! And he was pretty funny too!

[@gw7208]

The body is just a vessel, the heart just a pump, this mans spirit is as bright as any beacon I've ever laid eye's upon.

[@cassandrakite4957]

Well said👏

[@humboldtharry4248]

G W. I sometimes get the feeling that people like Johnny are being prepared for a higher spiritual purpose. Not to sound cliche but he must be an angel in training to weather this torment with such a powerful attitude.

[@daveurbex]

You meet him in a parallel reality - any quantum state is possible.

[@tabby73]

@@humboldtharry4248 You could very well be right! Very bright he was - and is!

[@maxmorgan2297]

beautiful words:)

[@isabellejubinville641]

What got me at the end... his mother, sitting there in clear grief, yet still mouthing the words to her sons favourite song. Such a heartfelt moment of love.

[@dangodaydreams7872]

Honestly, I don't have any chronic illnesses. My depression has been getting very bad as of late and my suicidal thoughts have been getting even worse. But...seeing this documentary really made me think. It makes me realize that so many people are suffering. So many people need help. I want to do something more in this life than what I'm doing now. Johnny made me realize that. He made me realize that even if I have something horrible in my life that I can STILL keep going and keep my head up just like him. He's such an inspiration and I'm so sad to have seen such a beautiful life been cut far too short. I wish I could thank him personally for all that he's taught me, but that isn't a reality. The only thing I can do is live my life and keep him in mind. I'm so glad I stumbled upon this extremely humbling documentary. This was genuinely a lifesaver for me. I'll try and do the best I can in my life for Johnny and myself.

[@dangodaydreams7872]

Linda Holt You’re such a dear. Thank you very much. I appreciate your kind words.

[@sweettea5395]

Unfortunately, depression is a chronic illness for a lot of people. :(

[@ChristieTwistie73]

Dango Daydreams If you ever feel down, reach out to someone, including me. I'm glad that this documentary helped you see that even though life really sux sometimes, it could be soooooo much worse. We are here but for a very short time. Much HUGS to you!!! Remember, you are LOVED!!!

[@Jacoe413]

I really hope your SI thoughts are getting better... that's such a scary thing to deal with.

[@MotherofDragons937]

I have chronic depression, ocd & panic disorder. I completely know how you feel. Just manage one day at a time and remember that so many things can change in life.

[@RandomCorvid]

When a man no longer fears his death, he lives his life to the fullest.

[@lisaburks2]

I just watched Johnny's video. He passed in 2003 and even tho it's been 17 years since his death, he is still an inspiration. God bless Johnny and his family

[@birdv.378]

When I first saw this I just had my daughter and when he passed my daughter turned 1. I'll never forget you Jonny Kennedy 😇❤

[@shannonbriggs100]

I love him, absolutely hilarious. Not sitting about sulking and moaning about the cards he’s been dealt, instead he’s cracking jokes and making the most out of his life. God bless him and I hope in heaven he’s having a blast.

[@robert351]

There is no heaven do you have avedence there is?

[@deborahlaing5963]

I lost my 42 yr old son just 4 months ago. This video has helped me to feel so much better. Thank you Jonny and God bless his Mom and Brother.

[@sailormoonXx]

My condolences mam , may your son rest in peace .

[@anasofduarte]

i’m so sorry for your loss. i hope you find yourself at peace. i know for a fact he is in a better place 💗

[@Johnnyrocks34]

Omg! Im so sorry! God bless and hang in there!

[@kclords1852]

I'm so sorry for your loss- When I lost my loved one looking up near death experiences really helped knowing they're in a better place. God bless you💜

[@KatKevaKelise]

That’s not such a bad age. At least you got 42 years of joy. I’m jealous. Your son is at peace now... I lost my 31 year old husband to suicide on February 28th 2021 - he was only a baby. My future died alongside him when he hung himself.

[@kellyhowful]

It just just really made me cry seeing him cry out in pain when his mother was removing his bandages and in the next second apologizing for what he said. He was such a humble and brave man. I'm glad he is no longer in pain.

[@ccorleans3063]

Same here 🙋🏻‍♀️💔🥺😢♥️

[@missvaleria1722]

I know that was the hardest part to watch! My heart broke!

[@kvizz9067]

I agree. The most gut wrenching part of this was hearing that interaction between him & his mama💔😭. What a sweet gentle soul he was💞

[@disclose_beauty]

I feel like this documentary should have done better . More insight on the illness and more explanation on how he died and why he was so sick on the last days (Maybe I'm dumb and they said it and I didnt got it I'm not from native english speakers countries) Anyways he's a great person with a lot a courage , seems that nobody thinks at that but you need a lot of courage to decide to die. Death is frightening , the uncertainty of what it will be its scaring af, the jump to the obscurity , the fear of the unknown. I'm not good in english but it needs a pair and he has , not only just to live a life of physical excruciating pain , limitations , frustrations etc but to jump into the unkown, decide to die. He also from this vid seems he affronted life with sarcasm and a witty personality, without whining like many 1first world people I see do on the internet for stupid things . He had an intelligent view of life Bless his soul

[@Der_Kleine_Mann]

@@disclose_beauty He got cancer.

[@Coyoteari]

“I want people sitting at my funeral nudging each other going ‘what’s with the Heinz beans logo’” I would’ve loved to be friends with this guy he’s basically bilbo baggins

[@ninastankewich9576]

А что за заболевание у чела

[@colt5189]

Though he ended up getting cremated with ashes thrown.

[@Johnnyrocks34]

He had funny wit. God bless him!

[@leahmarshall1593]

Watching him get his bandages changed was excruciating. I just burst into tears. I have so much love for him and yet don't know him personally. He has the most amazing personality, and I believe we all could learn something from him. Thankfully he is no longer inside the body that caused him so much pain. May you fly high Johnny Rest Peacefully

[@mom4u412012]

Extremely painful. I hated being in same room when my nephew had to go through it

[@leahmarshall1593]

@@mom4u412012 I am so sorry. It is so unfair for anyone to have to go through that. whether seeing it or experiencing it.

[@mom4u412012]

@@leahmarshall1593 thanks. I miss mike everyday. But glad his pain is gone

[@iminyourhead9936]

That's a really nice comment Leah. I know you're a nice person. I found it very sad too and it really those put things in perspective about problems we have in our own life's. I'm not making light of anyone's personal problems but very few people have had to deal with conditions like poor Jonny. Have a nice day.

[@leahmarshall1593]

@@iminyourhead9936 Thank you. Yes you are so right, it definitely makes certain issues in our day to day lives seem silly in the grand scheme of things. I hope your experiencing happiness and success

[@dnsoulx]

this dude put the heinz bean logo in his coffin, what mad man i love him

[@marjunordman2797]

Absolute madlad

[@cthulhuhoops]

@@marjunordman2797 the maddest of lads, we respect

[@amandaroman3471]

Definatly a legend! I’ve seen many videos about his life and it never stopped amazing me how he can have such an amazing outlook on life and be so funny like that with what he had to go thru. Ugh. I hear “eb” and immediently cringe. It has to be the worse condition I’ve ever seen... just so heartbreaking and imagining how much pain he must have been in all of his life ... just don’t know how he did it and I’ll always admire that about him and look up to him for sure!! ANYWAYS I’m rambling sorry lol I was gnna say I thought the coffin idea was genious and want to do a similar idea on my casket too lol :)

[@enolgrenior159]

@@marjunordman2797 jjjjjjjjjjjjjjjjjjjjjjjjjjjjjhjjjhjjjjhjhhhhjj

[@user-ob5bj3xi8u]

@ak on your comment was not needed 🤪

[@cjsirm7109]

I woke up yesterday morning limping, holding back tears because my arthritis is painful. Later, I watched this video. This morning as I limped out of my bedroom I am grateful - my depression lessened for sure. This man and his family are an inspiration and helped me put things in perspective. Thank you for sharing this video.

[@jo_verabradleyfan4743]

❤

[@addicted2cosmetics911]

I felt exactly the same, arthritis is horrendous for people that have it and no one can really see what's the matter... but this man's will was on a whole different level.

[@vcassol6989]

Another RA patient over here! Yes, its terrible ...painful, exhausting, expensive... but if I compare RA with EB arthritis is a dream...

[@NewGothOnTheBlock]

I can relate to you so much! Have two different types of rheumatism. Tietze syndrome (long story short: Rheumatic ribcage) and Fybromialgia. Also have days when even waking up is painful as all heck.. and the simplest of movements are a struggle. But indeed, looking at stories like the one of this great MadLad (narrating yourself and saying “that’s me in that box” before you die is beyond great”) cheers me up a lot. I don’t know you personally, but if you (or anyone with similar situations) ever want to talk just add me on IG 😊

[@alexanderj1024]

Look into borax research please. A Australien found out that the lack of bor is connected to arthritis. He sold it to cure it and wanted all people to know. Then he went to big Pharma. They realized they couldn’t make any money anymore and hide the effects now. Look into it

[@itsmedavinski8977]

I made it through the whole documentary without crying...and then the curtain closes and I lost it. What a way to leave. He was such an incredible human being. And that Queen song...seemed like just the perfect song for him. May he rest in peace.

[@Gerrie_de_B.]

I cried already in the beginning when he started over that Heinz logo on his coffin :D

[@sammiejones1837]

I was so interested in his story. Such a brave man to endure his suffering for so long. He gave us all food for thought. We are all here to learn lessons of all kinds before we depart this beautiful world and our spirits lift Heaven ward. I thank him for sharing his story. He was an amazing spokes person and promoter for finding a cure for his illness. One could say he was a hero. God bless his soul. And God bless his Mom and brother and friends.

[@TiaBivens]

“Any severe friction, such as constant wanking” 😂😂😂 I love his sense of humor, even in the worst of times he stays positive and just wants to make people smile. This is my second time now watching this documentary and I’m sure I’ll be back in the future for those laughs. RIP ❤️

[@beabeatrix299]

I can imagine him saying “alright bye then” before he dies

[@nunungnurulfitria6836]

Bineapple Bizza 😭😭😭 RIP Johnny

[@erengrad6950]

Bineapple Bizza no man don’t say that. It’s funny but thinking about him kicking the bucket makes me feel horrible for him.

[@sydneyhendrickson9174]

Erengrad 45 honestly, it was probably peaceful for him to be able to let go and relieve himself from all the suffering he had to endure. I imagine he is happy where he is now and that’s what matters the most to me at least

[@mustachiomustache5591]

lol

[@xrtic9135]

ME and him r both boys ily 4erver

[@vcassol6989]

46:55 that breath his mother takes seems to be a mix of pain, relief and peace... what a brave lady...she finally rest from seeing his boy suffer for 36 years...

[@childofthemighty1341]

True

[@polaroidsofpolarbears365]

I've been through it. when you're surrounding a loved one waiting for them to pass and they finally do, it's bittersweet. You're happy they're not suffering anymore, but they've left this earth and you'll never see them again.

[@whoangelnever]

19:44 “I never knew the words... I was always a crap singerrrr...” We didn’t deserve Johnny.

[@marypeters4576]

I started laughing out loud so hard at that part. He was very funny.

[@yochaz2u]

I just caught this. Man he was a great guy.

[@keepcrying4110]

You bad asf 😂🤤 but rip

[@werearethedreamteam3724]

Yeah I thought he was pretty funny.

[@TTeeee]

I didn't catch that. I was just like, it doesn't sound like he's singing the same words as everyone else. Lol

[@ItsToioko]

It is January 2022. I have watched this so many times dealing with my own illness. Crying myself to sleep and realizing after watching this and wiping my tears away and knowing it could always be worse and to be thankful to still be alive after 27 years on this earth. The joy he has brought me and the perspective he has given me has always made me feel better. Thank you Johnny.

[@costernocht]

I watched this years ago and never quite got over it. Jonny was a warrior.

[@erin7383]

Think this is my Third time watching it. Always come back to it

[@Newton14alan]

costernocht --- I watched it years ago, as well, and almost didn't watch it again due to the scene where his dressings are being changed. If One has even the slightest hint of empathy, lurking within their soul, it's nearly impossible to watch. I'll probably have to wait another several years before I can watch it again. That said, this is an extremely well-done documentary. And, yes, you are so right: Jonny was (and is) a warrior. Be well.

[@may___021]

Me too, I watched this about 3 years ago and I never forgot about it. It's unusual for me to remember something like this, but Jonny stuck with me.

[@marmac7467]

Wow, even when he knew he was going to die very soon his spirits were still up. That's incredible. RIP Jonny.

[@thecraftycyborg9024]

Mar Mac - as someone with an excruciatingly painful disease, I can understand not being frightened by death. When you're trapped in an inescapable hell in the form of your own body day in and day out, after decades of suffering, death doesn't really sound all that bad. I'm not saying that everyone with severe chronic pain is suicidal, rather that we don't live in fear of a death that will free us from the body we're trapped inside.

[@aimeek1236]

Yes Cassie C that's exactly how I feel.

[@simplydanlrene4276]

Those were days I had Mahatma Kane Jeeves....and my son would stand at the foot of the bed and tell me "hugging thoughts mama"

[@joebeefhash5549]

@@thecraftycyborg9024 I hope you feel well today and I am so sorry that you have to live in pain. Your cat looks like a sweetie and you're beautiful

[@TKthings]

@@thecraftycyborg9024 well said. I understand personally as well...😍

[@maura3927]

He's got that old Hollywood star type personality- one line zingers and sarcasm.

[@hopefuldavid3320]

Where?

[@tj-8422]

True wit.

[@Venus_Phoenix]

Almost like that short guy with the glasses that came in the Jumanji movie I think his name is Danny Devito

[@sparkplugpeggy4910]

MAURA YOU NAILED IT!

[@2-d_in_a_bag]

accurate!

[@Incompetences]

I spent the whole documentary bawling my eyes out. I wish he could have gotten the love he so desperately deserved and ached for, but I'm glad he got it from his family. It's obvious that he was greatly loved and is obviously sorely missed. His mother was an absolute angel. You left a mark on the world, Jonny, even all these years later. You made a difference.

[@shonna4545]

I am a weak, WEAK person. I complain about ever ache, every bad thing that happens, insignificant things. And then you have this incredible soul that stares death in the face with a smile. This was very humbling. RIP, tiger!!!!

[@ColdBaltBlue]

A person like Johnny wouldn’t believe you are weak. Life isn’t about comparing struggles and competing in the pain Olympics. Your mental health issues are no less legitimate than his physical issues. What matters is how you get through life and overcome what ails you as best you can. Your life will never be perfect, but that doesn’t mean you can’t be happy with it. Assuming people without physical disability or deformity are or should be the happiest people on the planet is plain stupid and the people who say that are usually able bodied people gatekeeping those with physical disabilities.

[@shonna4545]

@@ColdBaltBlue thank you!!!

[@shonna4545]

@ImNotMad ButUR it really puts things in perspective, doesn't it? Have a blessed day!

[@melancholycollie1466]

Omg I am thinking the same when I watch this. What am I complaining about in life when this guy is a superhuman soul and still happier than I. Dammit I'm a fool.

[@Allthingsgreat1]

Shonna R. I’m weak to 🤦🏻‍♀️

[@happydays1336]

Before my father died, he said with a twinkle in his eye, "When people come to the funeral home to pay their respects I'd like a recording of me saying "'Thanks for coming to my funeral. I hope you enjoy your time.'" (Or something to that effect.)

[@rachelgonzalez8051]

Were you able to play a recording at his funeral?

[@happydays1336]

@@rachelgonzalez8051 No, he never recorded one. I'm sure he was just joking but it would have been kind of neat if he had!

[@NewGothOnTheBlock]

It reminds me of a video I saw a while ago. I believe it was from Ireland. A guy made a recording before he died saying “Hello? HELLO?! Get me out of here!!” Which played the moment his coffin went into the ground (as far as I know his family was aware he wanted to do that). I’m sorry for your loss! But it is a great way of knowing that someone has accepted death instead of fearing it 🖤

[@ShawnaCosmica]

@@NewGothOnTheBlock I saw the same video of the Irish guy and his recording. I was going to say something about it too and that I think its an awesome idea!

[@shazza4]

What a character 🥰 the world has lost an amazing beautiful intelligent man 👌❤️ Life can be so unfair

[@jduill]

Your life mattered john . You showed millions of people what bravery is. What decency is. How a man should conduct himself. How to keep it together when things are truely awful. What a gift life is. We have never met but im sure we would have been friends. Peace out irish john.

[@marilyntape9050]

john doyle you will meet up with Johnny on day 😃🇦🇺

[@cynaptyc]

Cheers!

[@angelas.9717]

Same. Thank you for saying it, so succinctly and beautifully.

[@ScotlandsYard]

I'm glad they changed it to, "The MAN whose skin fell off", rather than "The BOY whose skin fell off". Rest In Peace and fly in the sky Jonny!

[@amywalker3684]

I have lost count of how many times I've watched this. When I start with the self pity, Jonny snaps me back. What a very special soul.

[@birdv.378]

I'm with you it's just weird that when I'm having a bad day Jonny pops in my head 🙏😇❤

[@zackpowell4180]

me too . ive watched this video over 20x . RIP Johnny .🙏❤

[@dwgherkemasnurdbird4803]

Try Alex Lewis.

[@nandistaton2503]

I love the way he explained life. "...Earth is just a classroom..." That just resonates with me so much.

[@dyztroyax4628]

As little sense as it makes I can see how.

[@axlyoung1218]

I believe death was okay with him. Because in this life he felt so much pain. And he's probably been ready for long time.

[@whotelakecity2001]

I agree.

[@shannamoxley1040]

Agree

[@kylasam8530]

His real life just started!

[@radimmynar5607]

but beautiful how he looking forward to every minutes in his life

[@mohsenslim4395]

I think that god has plans for him for the after life what a person so humble so strong RIP Johnny

[@ericbrady5529]

Dude made me laugh and cry 18 years in the future, he lives forever now

[@figgynewton939]

Ikr, he made me laugh with the constant wanking comment, then talking about seeing down that chicks shirt🤣🤣🤣... The world lost a wonderful funny soul the day he passed away, SOOOOOO sad😓... Rip❤️❤️❤️❤️🌹🌹🌹🌹

[@bayleyolomon3369]

That part where she's changing his bandages my heart just broke. Such a beautiful soul having to suffer so greatly. I'm glad he doesn't have to suffer anymore 💜

[@DarnellHendeason-dk3uw]

It's very difficult to deal with.

[@ItsNaniUnhooked]

Brought tears to my eyes. I'm such a ungrateful human... when he laid in bed and described his getaway.. I lost it... you didnt deserve this Johnny... you will never be forgotten and thank you for showing the world how incredibly strong you are in the face of such pain.

[@mattgaynor1847]

It made me cry

[@GhiaDon7]

Dude was a wordsmith. When butterfly-woman was breaking down, "this will be history" "you're a part of history". Just damn... making HER feel better

[@braveheartedme7855]

GhiaDon7 what’s a wordsmith

[@greenearthblueskies8556]

He spoke truth

[@monicathomas3386]

@@braveheartedme7855 means he has a way with words. He is good using certain words and putting together something with humor or something to make others feel better.

[@popslibra6885]

I have found myself watching such stories randomly whilst I was dipping into depression and it is amazing how the courage and drive people such as Johnny have made a difference of telling myself try each day pick yourself up it's going to be ok. He's such a remarkable person...

[@TheGong00zler]

Same

[@MaddiesMamaRN]

I do the same, except for me, I watch to remind myself that there's always someone else in more pain than myself. I have a condition in my brain that is proving to be inoperable, after 3 brain surgeries attempting to treat this condition. I was told it was potentially inoperable, but I chose to attempt the surgeries anyways, and they all failed. So I'm in a lot of pain every day. I get depressed as well, and I watch these documentaries to remind myself that even though I'm suffering, there are so many others that are facing death, and they do so bravely. So I put my faith, and my life, in God's hands, and I get through the days the best way I know how. Some days it's one hour at a time, some days it's one second at a time. I hope you're doing well today! 💙 Megan in North Carolina 💙

[@kathy411]

Sometimes random things are just what we need to help us through another day. Pops libra I hope you’re doing well

[@mercedesprecht-matuschek6026]

@@MaddiesMamaRN My thoughts and prayers are with you. My fears feels for you. I have several autoimmune conditions which destroy my organs and severe spine issues. The pain is constant and excruciating, the depression deep. Have been like this for over 6 years. I am alone. Came across Johnny's story today and it taught me a lot about humility, endurance, courage. I have always been strong but must admit that lately the pain and what it has done to my life has taken its toll! Johnny's story has given me a new ray of light out of this darkness. I pray for comfort and peace for you. God is with you. A very gentle hug. Mercedes in Virginia

[@MaddiesMamaRN]

@@mercedesprecht-matuschek6026 I'm hugging you right back! 💙

[@19zuzi82]

His spirit was a hundred times stronger than his skin failed to be. Go, Tiger, defying the laws of gravity.

[@jennjeffs4893]

I think without his wonderful sense of humor he wouldn't have lived as long. What a wonderful man!! I am glad he is free from his defective earthly body and now roaming beyond the veil in peace and comfort.

[@venicegee3675]

Oh yes i can just see him when i close my eyes❤

[@smittysmeee]

Coming back to haunt people every now and again, going a little poltergeist for a laugh.

[@1211jinx]

Megan Smith he could be like Casper 😄 friendly ghost..

[@emmestein]

Jonny would have had great success as a stand-up comedian. He had such a great sense of humor and his charming personality shines SO brightly. Sleep tight.

[@jf31]

looking at the comments , its amazing how many have seen this and return to see it again. Johnny is reminding us to never forget him.

[@chelseajennings5969]

Imagine how his mother having to change those bandages! Putting your child through pain he has to go through to continue to live! So sad!

[@gardensofthegods]

Chelsea Jennings Yes... horrible just like burn victims in the hospital... I knew somebody who used to change bandages decades ago in the hospital and he said the burn victims would start screaming when they saw you coming... how sad how really tragic

[@kaimalikb]

gardensofthegods how sad,how so so sad. I wouldn’t have been able to do it

[@n.n5641]

Once a week for 36 years.. That women was extraordinary.

[@oceanaggg]

his frustration after dropping his hat completely broke my heart. i can’t imagine all he’s been pushed through, he’s so incredibly strong

[@rachaelkeach24]

Yup that got me right in the feels

[@ccorleans3063]

Same here 🙋🏻‍♀️💔💔💔💔🥺😢 I’ve cried laughed and then cried some more watching this he was amazing!

[@ccorleans3063]

@@rachaelkeach24 me too 💔🥺

[@nosilee2964]

I have been extremely depressed. I lost my job and feel worthless and watching this, it touched me in a way I can’t explain. It helped, so much. His entire outlook on life... I wish I could have met him. Rest In Peace beautiful soul

[@andriebester]

I salute Jonny's mother for her unfailing dedication. What strength of character!

[@lizmorrison4284]

Sitting here sobbing. Wow. Wasn't ready for this today.

[@bettygreenhansen]

Liz Morrison Me too. But it’s a good sob! Jonny was inspirational.

[@noneyabiznazz4559]

Same

[@idontcare0909]

Makes me question my life and what I'm waiting for. Half the time I'm scarred to jump outta my safety bubble and worry about failure, success, health, family, friends, work, school, ect...this makes me realize I'm waisting away my life worrying about nothing that will matter in the end.

[@durandyoan2913]

I don't care we are all like that don’t worry...

[@katherinephillips5640]

So true

[@Cjw101]

@@durandyoan2913 but you should worry...you could be so much more

[@rbivgq1734]

DURAND is right we are all like this but i do worry, i feel like when i watch something like this it helps to ground me and have a different perspective and above all else be more thankful.

[@martinmolloy388]

Every man dies, not every man really lives!

[@elizabethlebel5724]

Imagine planning your own funeral with such positivity, I wish I could be positive like that, even just half the time.

[@moodykimwele2564]

The part where his bandages were being changed, just killed me. I just realized I don't have problems. RIP Johnny

[@MelonieG85]

I know 😭😭💔

[@alisaishere]

I sit here with a list of chronic illnesses and genetic illnesses, and I have to admit that even at my worst, I still couldn't compare to the agony of that bandage change.

[@bastian6173]

We all have our problems! His should minimize yours! "Others have it worse" is useful at times but don't forget that we all sit in the same boat, we're all humans and we all share the same fate of aging, sickness and death. But yeah, Jonny is a hero!

[@dorcusnisa]

it made me reflect on my life ,and i realized how stupid and ungrateful horrible person i have been..damn me, i wont take life and family for granted anymore

[@meganmcclory1137]

Same

[@tzzz7]

I hope I get to know this dude in another life

[@TheMouseAvenger]

I'm sure you will. ^_^

[@patriciarowe3431]

T s,,, you will sweetie!!!!!! All of GODS PROMISES ARE SET IN STONE AS IT IS WRITTEN. I HOPE TO SEE ALL THERE. GOD BLESS

[@rachel9946]

I think we all do. Truly remarkable man.

[@gr8macaw1]

yes me too. Such a nice guy wish I had known him

[@TELEVISIBLE]

I don't believe in it but I wish him in a better place , a better life

[@fluggert5261]

Just from this Documentary he seemed like a funny guy when he was here. his jokes are hilarious. when he's talkin about his disease he says "any friction, so like wankin too much" such a funny man. hope he's doin alright up there.

[@wrenpeach6707]

Lance Smith, If heaven is full of idiots like you I'd rather go to "help" anyway.

[@kbmls3]

Lance Smith Piss off

[@fluggert5261]

Lance Smith God has abandoned us

[@fluggert5261]

Lance Smith I said US. We are killing our planet, our selves all in the name of God. He has abandoned us

[@fluggert5261]

Lance Smith I will not read a book that has been used to kill. To kill other religions, people who love a diffrent gender.

[@AngelDust666]

This man looked death in the eye, and gave it the middle finger!

[@patelpelat4658]

Two fingers, we are in England !

[@TheKarahan2011]

Even grim reaper must've smiled to johnny and welcomed him.

[@dyztroyax4628]

Thats the opposite of the truth.

[@deidragovan9552]

Pretty much

[@natelovestotank2363]

Because he knew he wasn’t going to have it much longer

[@KotasMama]

i think about jonny a lot. even 19 years after his death he’s still making an impact on people. rip ❤

[@carolwilder2289]

Amen!

[@cheftornado1114]

I also think of him often. He’s around!

[@obscurelyvague]

@KotasMama I am not religious but I have watched this video over and over a few times. It seems that psychologically it is good preparation . I am not expecting to leave this earth soon but it gives you something to think about.

[@andrewwright7567]

I have never heard a human be so humble and at peace with his journey,,,,fly high Jonny i know your everywhere

[@Lucy-fn9rj]

despite being 36, jonny acted exactly like a 90-year-old who acts young

[@tylork8025]

I had a 90 year old friend when I was 12. He told me "I might be older, but my mind is still as ridiculous as it was when I was your age, maybe just a little more zany from being in this world."

[@anasofduarte]

he’s an old soul 😌

[@evalevy2909]

He's been through alot.

[@codyrichey810]

He was still a virgin

[@Ethan2Tone]

@@codyrichey810 no different from yourself.

[@David-mv3zl]

"It doesn't mean anything, but it'll get them talking."

[@theproudpinoy1015]

Racist!!!

[@ianmills6260]

@@theproudpinoy1015 what

[@philippschmitz1787]

@@ianmills6260 Didn't get that either... Proparbly a Boris Johnson fan, climate change denier, potential Trump supporter, flat earther and overall troll. In Germany we have those, too. Dunning-Krugers from mount stupid.

[@shelbygarcia2038]

@@philippschmitz1787 Jonny literally said this while they were talking about the Heinz label on the casket.

[@Shamariah2011]

I miss Jonny. I have seen this in full 5 times but I keep going back occasionally because I miss his humor and spice for life. The can of beans on the casket says it all

[@Shamariah2011]

Coming back again today :)

[@alexvillafuerte9628]

Sameeee

[@j1nx442]

Same

[@greenearthblueskies8556]

Me too🤷🏽‍♀️

[@Shamariah2011]

And again today.

[@LTF1138]

I saw this on tv when I was 14 or 15 years old, I’m 32 now and watch it every other year or so. Such an amazing person.

[@jeniferburton5235]

I wish I would have known Jonny personally (along with everyone else), but he was half a world away and I was only 21 years old.

[@brookevanfulpen7039]

This made me cry my eyes out........ I'm still crying....... RIP JOHNNY

[@frankboff1260]

Brooke Van fulpen Me too....

[@sailormoonbanana4629]

*sniff* same...

[@briel7904]

"I could see right down that t-shirt when she bent over." This dude was hilarious!

[@amd-bu2mf]

Lol this dude is a pimp

[@dyztroyax4628]

@@amd-bu2mf Was, you mean.

[@izzykello8326]

@@dyztroyax4628 his spirit will last for eternity

[@nunyabiz6532]

creep

[@briel7904]

@@nunyabiz6532 troll

[@SadGemini.]

RIP Jonny Kennedy, I dont know you but I miss you already

[@amandadulaccoughlin6243]

Kay Kay me too! I wish I had known him. I hope I get the chance in my next life or heaven.

[@juustopuuro7297]

@@amandadulaccoughlin6243 i dont miss him

[@coaltrain]

@@juustopuuro7297 Because you miss your Uncle Daddy playing polka pump in your schnack smacker. Just like his Bro-Uncle did.... you know how you inbreds are.

[@LordXenuSaves]

@@coaltrain UK burns are funny, polite delivery of an epic burn

[@_Sublime_]

Jonny it has been over 21 years since you left this realm. I came back to say you brought so much attention to your condition and have helped so many others suffering with it that there has been much progress in the treatment and care of others. What a beautiful legacy you left behind. A true warrior! Your elegant way of appreciating the soul and it's ability to soar has inspired so many others. We all share the same journey, one that has no ending, but instead, new beginnings in eternity. Thank you for your courage, strength and convictions. Fly high on those beautiful wings Jonny!

[@nazare2820]

"I was always a crap singer."😂I love how he still had humor and he didn't think of death as a bad thing. He accepted it.

[@brittaniosullivan7745]

I agree

[@sassyfrassezme]

I had to listen to that twice to see if he really sang what I thought he did. Very keen sense of humor!

[@connorade6969]

Accepting something like death or the death of the loved one is the only way to living the rest of our lives without fear or guilt or sorrow.

[@timothyclift5945]

Connorade death isn’t much I died three times and honestly I never had felt so rested when i came back was in a coma and was no sense of time but was very refreshing when I woke up I understand where he’s coming from about death, it’s the family that suffers. What a awesome bloke he was

[@rachelschwebach7566]

Johnny Kennedy lived and died with such wisdom and dignity. I hope he is resting at peace. His mother is an angel. Makes me grateful for my life despite a lot of problems.

[@ste.b.7400]

There are many horrific conditions human being can suffer, but the story of this man touched my heart. He suffered too much and he spent 37 years in pain. His daily routine for taking care of his skin was a torture and I admire his mother, by his son from the beginning till the very end, always there for him. It's a very touching story. And the smile and the strength of this little big man is a great lesson of braveness and determination. I know his spirit reincarnated into a much healthier body and that he's having the wonderful life he deserves.

[@GSF179]

This documentary broke my heart. Makes me ashamed for ever complaining how difficult life is. That guy is a trooper and a real man.

[@michelleleah3627]

Phenomenal sense of humor! Hope he finds himself on a cloud smiling down at me one day! RIP Jonny!

[@NohealaniMakanani]

Whhhhaaaattttt??? He died?

[@cavernedmochache4455]

He died many years ago, 26 September 2003

[@cavernedmochache4455]

Lulu cat, ay the beginning of the documentary he was actually dead. He had just died. He made the documentary before his death, but it was put together to air after.

[@NohealaniMakanani]

@@cavernedmochache4455 Ah dang. I didn't watch the whole thing so I didn't know. That's so crazy.

[@vickyoli]

He is the strongest man I’ve ever seen. As a nurse, Ive seen many bad diseases, but the way he manage the pains through the years and now knowing he will die... I couldnt do that. He, he is ironman.

[@ashleybee5569]

Seeing him in pain as his bandages were removed completely broke my heart.. god bless his soul and at least he’s in a much better place now ❤️

[@hejustleft]

The god that fu(ked him in one of the cruelest ways should now bless him?you the god bless crowd should give it a rest.

[@Meow-gp5nk]

@@hejustleft Let them believe; it's to keep the death anxiety at bay ... To give meaning to the suffering ...

[@hejustleft]

@@Meow-gp5nk You're correct.

[@kristenjustkristen9462]

@@hejustleft plus you really can't say for certainty that God doesn't exist. You'll only know when you die. It'll either b a "wow, I was wrong" moment. Or, no moment at all. Bc you're dead and worm food. I like to believe theres more. Not sure of what it consists of..But this can't be IT.

[@Memphis_ritz]

I’ve spent a lot of time on the internet from being unemployed and mentally unwell. Far too much more time than i care to admit. I’ve watched every documentary from A to Z but i have to say this is one of the most emotionally profound ones I’ve ever seen. His attitude and outlook are incredible and i envy his acceptance of death

[@willgetbettereventually124]

I've had trouble the past couple years with depression. I started therapy about a week ago. If it's something you can afford to do it makes things so much better.

[@Memphis_ritz]

@@willgetbettereventually124 i had therapy for a decade growing up. It doesn’t do anything for me other than provide a person to vent too. I’m finally trying out medications. (SSRI’s) now. Hopefully that works. First one i tried didn’t do anything. Just started a new one last week. Fingers crossed

[@willgetbettereventually124]

@@Memphis_ritz 🤞🏾

[@Memphis_ritz]

@@willgetbettereventually124 indeed. Thankfully my wife is a surgeon. So I’m in good hands and she’s helping me figure out what meds to try. It should be 6-8 weeks (again) before i know if it works. They warm you up to them slowly to make sure there are no major side effects so it’ll be a couple months of trying it and adjusting dosages before i know if it works.

[@2-d_in_a_bag]

me too, matt. been through a lot, mentally unwell and scarred, on meds. but that documentary was one of the best ones i ever watched. i'm trying to adopt this mantra: death is not the opposite of life, it is the opposite of birth. life is eternal.

[@abigail1994]

missed his calling! he should have been a comedian, he was hysterical! i love dry humor. Rest in love, Jonny

[@nyendochamwela3031]

Forgive me my Lord when I complain about situation.

[@tesedikova]

The mother is queen how she takes care abou her son and this brave boy, no coment....Johni we have to learn from you....💗

[@FG-pn2mb]

Amen forgive us I hope you doing good May the Creator gave us strength and courage to face it for any situations we face will be wait for us support and unconditional love.

[@smittysmeee]

He does 🤗

[@patriciaroberts8694]

Yes...

[@GinoNL]

😂😂

[@operationopenup]

I've never seen someone live such a purpose-driven life. Jonny, you have inspired me.

[@cyberspelunker1980]

What a brave and awesome dude with such a good personality. His mother’s face, the terrible grief, and also the relief that she did as much as she could and loved him as much as she could, and that he is no longer in pain. 😔 “I’ve got a dodgy shell” he says. Sense of humor through so much. What an amazing person.

[@marieb.1372]

He is so cheeky! What an amazing spirit.

[@Sheltieshangrila]

"Such as constant wanking." LOL. God bless him. He was such a character. I hope he is happy and pain free now. RIP Jonny.

[@Sheltieshangrila]

@Bartek270 Because he made a joke that was funny. What is wrong with you?!? 193 other people got it. Apparently you did not.

[@micusferreiro3789]

He can't be happy or pain free, he died

[@somethingaboutbeauty8245]

@@Sheltieshangrila don't even give trolls the time of day. I know what ya mean. 💖

[@melswanson502]

Anyone who doesn't realize he's now pain free and happy, has never been in pain.

[@chanda6973]

@@micusferreiro3789 your disgusting. he was living with a condition that made him have to have his skin torn off everyday and now he doesnt have to suffer. ofc hes happy and pain free now. death was what made him happy. rip jonny

[@sallyallen6147]

What a guy...very great sense of humor......I can identify with what he went through. My husbands brother in law had the same condition. He was the only person to live to be 52 yrs old...eventually his issues created cancer and lost an arm.....he was as Johnny a bright man, with a positive outlook in life. Oregon Health medical teaching hospital . They gave him all his treatments free to,learn from his condition as to how he lived so,long...they have a section of the hospital dedicated to him. He as Johnny had issues with his vocal cords, feet hands and so on. What an example of courage Johnny had and his parents gave him the love he needed and they must have been so,proud of him. My husband dedicated his week ends to Lee and even during the week if needed him. They would go to dinner or come over for visits . He did all of his life with determination.... God bless Johnny and Lee..perhaps they know each other now.

[@dutchweller]

I just cried watching the bandages being changed. This guy is more of a MAN than many who claim to be such. What a a wonderful Man.

[@onemuckypup9823]

I hate to admit that I was a coward watching this poor soul having his bandages changed - I couldn't watch it all. I bawled my eyes out for him. My god what this guy had to endure was so cruel, but I'm glad that he had such an amazing family behind him.

[@ShanaLawson]

I remember watching this over a decade ago. Him and his story have always stuck with me ever since. I’ve even contemplated getting a can of baked beans tattooed on me in his honor.

[@TheTardisDreamer]

Same. I watched this documentary years and years ago too and it had a profound effect on me too. I've never forgotten his story. I think it's amazing that in 2021, nearly 20 years after his death, people are still getting to hear his story and learn about his legacy for the first time. I think it would make Jonny happy.

[@chronitrox448]

Thats an insane tattoo idea. So much respect and admiration for this guy. I wonder what his opinion on permanent ink under ones skin was🤔😂

[@rebekahlikesmusic2723]

Same for me, yall. This amazing man has always stuck with me. It's 2021 and I'm watching this again. Never forgot him. What an absolute legend. In my faith, i believe he is soaring high and pain free in heaven, partying it up! I hope when God calls me home to heaven, i can meet him and have a beer with him💚🙏🏼 God bless his awesome family💚🙏🏼

[@JacquelynNhi]

I've watched this story now for the 3rd time. I seem to navigate back here when I need real perspective on life and what it means to be alive and healthy at the same time. There's a bit of guilt that comes along with me regaining that perspective though. I almost feel as if i'm using him to feel better about life at that moment. However, if life is about growth then this story definitely gives me that and then some. All the way from the NorthWest side of Chicago R.I.P sir.

[@useyournoodle100]

You shouldn't feel guilty, it is why he made this documentary. I am not a religious person but I do believe his spirit lives in every person who sees his story. If that spirit helps you appreciate your life and health, then he lives on. It is so easy to lose perspective in a world that glorifies the superficial; extreme wealth, fame, celebrity and image. A good grounding every few months from someone so brave and wise only honours his memory.

[@rachelgonzalez8051]

@@useyournoodle100 I wish I could like your comment a thousand times.

[@Eva-gs5uk]

I agree, his story is magnetic. As a young person with a chronic illness, I don't think you should feel guilty at all. Those whose bodies are unkind to them are often able to extrapolate interesting takes on life, and sharing those takes with others is what makes them meaningful. I am so grateful that Jonny wanted to share his perspective with us.

[@SC-gp7kt]

We are all in this together. Dont feel guilty.

[@Janeintheok]

@@SC-gp7kt you're right

[@kerrysig9244]

What an incredible man. I hope I'll meet him when my time comes. 😇

[@kerrysig9244]

I cried my eyes out at the end. My God, what a guy. With what he's had to endure, what the hell do I have to complain about? This has made me appreciate everything I do have.

[@marilyntape508]

kerry Sig me too

[@julienichols5490]

Marilyn Tape me 3 I have always been told about the book why bad things happen to good people but I still haven't gotten around to reading it

[@southpaw5041]

@Ash Wolf if he is in heaven he will... God I'd very real... everything has a creator plain and simple. Have a good day God bless

[@JohnWayne-86ed]

kerry Sig No, you won't, you'll cease to exist, it's all good though, nothing to fear in nothingness☺

[@shanshanhiggins7314]

It's now August 15, 2021 and I just stumble upon this Johny was such an amazing and special person RIP thanks for sharing apart of your life journey I couldn't hold back the tears watching him getting his bondages changed he cried in pain and then apologising for what he said he was such strong person

[@purrrrrrrrrrrrrrrrrrrrrrrrrrr]

this is one of the most important documentaries for anyone to witness. i’ve found myself coming back to it for the fifth time in three days. thank you for sharing your story jonny, fly high you charismatic madman! your spirit is touching to witness!

[@jennehwion7613]

After watching this documentary, I have no reason to complain and feel bad about myself anymore. I am 5ft tall and weigh 48kilo and have insecurities issues about the way I look. Since high school, I was teased because I have always been small. I have not been able to overcome shyness but I still manage to survive. But I am lucky to be the way I am. Thanks for the video.

[@peahesmurphy5163]

You're awesome dude. Go be great.

[@queenoftheuetliberg4790]

Jenneh Wion I’m also 5ft and 48kg😊

[@petertremblay3725]

What is really sad is that amazingly good people are often crippled on this planet! I hope you are happy wherever you are johnny...

[@mas9981]

that is so true...

[@petertremblay3725]

mas This little boy story make me cry like a baby today... Merry Christmas to all and to you Johnny.

[@paigecarpenter2001]

Peter Tremblay OMG.. I haven't cried this hard in a very long time...

[@petertremblay3725]

paige carpenter A kid should never have to go trough something like that ever...Make me sad to see very bad people in perfect health.

[@BBand3DG]

you guys know he wasnt a kid when he died though. He was 36 in this documentary.

[@GhostsOfJenova]

His mother deserves to be sainted because the fact that Johnny lived as long as he did is a goddamn miracle.

[@TheBrokenLock]

especially with the type he has- it seems he has RDEB which is the most severe form of EB you can have, and the life expectancy is just 30 years

[@AlessioGiandomenicoMameli]

In my opinion, it would have been very better making an abortion, in order to avoid this painful life to her son. Don't you agree?

[@lucykerslake5423]

@@AlessioGiandomenicoMameli They mentioned that the interuterine test wasn't available at the time she was pregnant, so she didn't know. She says during the video that she would have aborted if she had known.

[@tempestzz5682]

@@AlessioGiandomenicoMameli chiaramente non hai visto o capito quello che è stato detto nel video,la madre dice chiaramente che l'avrebbe fatto se ci fosse stato il test per saperlo in anticipo...

[@24bidy]

@@AlessioGiandomenicoMameli Yes I would never want my child to suffer so much It would kill me

[@mackenziec2516]

TO laugh and joke while you’re getting your own coffin made takes an incredible type of person

[@leeenoch8847]

Death is another part of life

[@greenearthblueskies8556]

Jimmy B.S. Roastbeef as WE know it

[@joshuatasker5275]

It's not even a happy thing weirdos its whether you know jesus or not.

[@EllawoodBlues]

Right!? What a pure beautiful soul

[@sandramunch179]

I think if u dont joke about it, it Will Be 2 hard.

[@tirill452]

As a fellow EB warrior, I wish you a happy, pain free afterlife. May you rest in peace

[@pizzafries]

What kind of medicine, do they use on you? I have cellulitis and it burns the skin, they gave me silver sulfadiazine after I asked them too and it worked wonders. So I was wondering if that would work, for your condition? Or is that, what they use on you?

[@kwpp7]

Find your peace in Jesus Christ ✌💖

[@Ninjacalf]

🙏

[@fabianatrindade56]

Oh no... hold tight, bud. Be strong, ok? I'm sending you my prayers! 🙏🏻🤗

[@livetochange974]

@octane center just because others have it worst doesn't make your pain and suffering all comfortable smh...you people are so stupid, so when you cut your finger accidently you're gonna smile and way "well the small 1 percent minority in the world has it worst than me so I have to show no emotion and endure the pain because I was born normal"

[@Aster_Risk]

One of the parts that stuck with me is when Johnny mentions abortion. I'm so glad he said that he believes you should terminate a pregnancy if the child has that diagnosis. People need to listen to that part, because he had to live this life. It's cruel to knowingly have a child whose life will be nothing but pain.

[@1Life2Little]

I didn't read up on that cure/treatment that he spoke about at some point... But if it is good enough to give them a good life now maybe abortion is not the way to do it? at least not now.

[@memeju1ce]

It sounds so selfish not to, of course it would be hard but I couldn’t imagine bringing a child into the world who is doomed to so much pain. There’s a chance my chronic pain could be passed down, so for me kids seem completely out of the question. I wish completely healthy people all understood this...

[@anastasiagonzalez3642]

@Not This Guy Again I’m sorry but if several people with life threatening disabilities are saying it’s cruel to bring a child into the world with a disability where their life is basically just constant pain, then that should speak volumes to you.

[@biggy1824]

Im pretty sure most people terminate a pregnancy just because they dont want a kid based on their circumstances not because of the kid going through pain and suffering

[@jacobkain4721]

@Not This Guy Again .

[@RavenPartida209]

Can't believe its going to be 18 yrs since he has passed. Was good to see this again. 💐💐🕯️💐💐