The Butterfly Child | TSN Original

14-year-old Jonathan Pitre is an avid hockey fan who suffers from Epidermolysis Bullosa, one of the most painful conditions known to modern medicine. But his courage and determination to live is unlike anything in sports. To learn more, or to donate to families affected by EB, go to debracanada.org/
Jonathan suffers from Epidermolysis Bullosa (EB), a rare genetic skin condition commonly referred to as "the worst condition you've never heard of". Jonathan was born with EB, and has spent his entire life in intense pain.
Despite his daily challenges, Jonathan's strength, character and courage - qualities we worship in our athletes - is unlike anything we see in the sports world.
Jonathan is an ambassador for DEBRA Canada, a non-profit organization and charity dedicated to providing support for families affected by Epidermolysis Bullosa, and heightening Canadians’ awareness of the condition.
TSN's James Duthie tells Jonathan's painful, and inspiring story. Viewer discretion is advised.

[@acornstairlift]

Butterfly Child? The kid's a fucking tank. Anyone who can put up with this shit deserves a better title than "Butterfly Child."

[@acornstairlift]

Anything that doesn't imply being frail.

[@Cavouku]

acornstairlift I kinda like it, actually. Makes me think of Cinderella Man, in that ironic-but-true way.

[@acornstairlift]

Yeah, I know what you mean. I'm kinda thinking more about how I'd feel about being called Butterfly Child, when the kid seems more than happy with it. That's all that really matters, I guess.

[@spikef22]

When it comes to strength this kid could beat out a SEAL

[@motnurky7055]

acornstairlift Tiger Child.

[@kronosrocks2591]

That kid, is stronger than all of us put together.

[@dfootball2384]

He is

[@michaelmcnally8963]

+KronosRocks My gf lives with this condition also. They are STRONG.

[@michaelmcnally8963]

+Arsenal mega girl - No one suffers more than EB patients and if you had to go through this you'd cry like a bitch, just like your favorite fake football team.

[@CSSB72]

+Arsenal mega girl Your words revealed to me that you do not suffer that much. Because people who suffer really a lot are always full of compassion, kindness, love, peacefulness, respect, humility and they are always full of life inspiration energy. But your words told me that you are really far away from all this values. I'm not saying that you do not suffer but only that because of this reasons your suffer is far away from this incredible kid ...

[@SweetDemoness]

Igor S. Agree 3000%

[@NarrativeFrontier]

“Even when I’m sleeping I still feel the pain” I can’t imagine not having an escape. Sleep is an escape for me. He’s not in pain anymore. Rest easy John.

[@briansefring4981]

Amen.

[@jalas3dk473]

Amen.

[@splinterbyrd]

And his mother deserves a medal as well❤

[@RissShot]

RIP Jonathan, hope you’re playing hockey in heaven

[@gettindirty]

The only positive thing to say is that at least he now suffer no more... 😢 He is painless and free now... 😔

[@Truels-qz7hp]

Wait he died?

[@makernewb]

😭DIP Jonathan I pray for him in heaven 🙏

[@sjcrowley19]

He died?

[@sjcrowley19]

Hope he’s the Wayne Gretzky of heaven

[@laswap1]

And there I am unhappy with my life because I'm overweight and single....

[@GloriousXoyas]

Rowan Williams Go work out then.

[@hollowearthreality]

Hey rowan. The best thing about being overweight and single is that neither of those things need to stay that way. I know its hard when you have a few extra kilos and u feel like shit. .. .but, you can change that by just controlling what goes into your mouth and what you do in your spare time as far as exercise etc. I have been on a health kick the last 7 months and have lost 21kilos of body fat. I still have a while to go until I reach my personal goal. Its not easy but you can do it. Trust me.... i was in a dark place with depression and everything that goes with it. U can do iy

[@Trollaukinn]

Rowan Williams You're entitled to your own unhappiness, just know that you're fortunate that they're fixable problems.

[@nicknickerson3049]

Rowan Williams sure makes all of your life problems seem microscopic.

[@90kiperberg]

Rowan Williams Today i've lost 80 lbs in 7 months by eating healthy every single day and working out for 30 min 6 days a week and i finally have a six pack lol xD. It is possible brother

[@juanlee337]

when you fee like complaining about your shitty day, watch this. i will never complain about anything ever again.

[@bobbobby1892]

juan lee keep complaining. Keep wishing for a better tomorrow. Keep telling the world that you are going to change it.

[@CakeBossan]

juan lee thats like saying "you cant be happy, people in xyz are happier than you are"

[@GoldenSodaXbox]

juan lee everyone loves the "someone has it worse than you" problem!Someone has it worse than this kid, so he needs to stop complaining, right? Don't trivialize other peoples' problems because someone isn't very well off either.

[@eternalposer1955]

***** Worth complaining about is the key here. I think juan is referring to the lack of perspective many people have. Like those who throw a fit cause their order is wrong or treat a rude comment like attempted murder. This kid has a more of a reason to complain than most and really doesn't. If you're complaining because you are just having a shitty day despite being alive, healthy, and (if you're watching this video) wealthy enough that you're not starving, you need the perspective that this video will provide.

[@Troxxity]

juan lee You can have it bad, even if others have it worse. Why couldn't you have it good, even if others have it better?

[@DHS9]

Jonathan is finally free... he earned his wings through great suffering but he now at peace having passed away on Wednesday April 4th at 8:38pm. He was 17 years old. Fly free Butterfly Boy... fly free...

[@guineapigthegames2944]

Didnt get the live yet...

[@airgregone]

I'm so sad for him , he lived his entire life at home injured by a disease anyone could treat it . I'm so glad I'm all right and I have no diseases . The pain must e terrific for jonathan's parents. Hope your name will be remembered and your name put onto a cup inside the hockey hall of fame that's a minimum he deserves .

[@guyfieri5468]

If only God prevented him from having this disease.

[@dimitriousslovenski8883]

Guy Fieri this is how we know there is no god. Seriously. If god is literally love then he wouldn’t allow genetic errors like these to exsist. And don’t tell me “sin” caused it. He’s supposedly all powerful, AND all good, that makes him impossible in light of conditions like these.

[@christianchimirri6137]

Dimitrious Slovenski god puts everyone on this planet for a reason maybe Jonathan’s reason was to tell people his story

[@DanielRomero]

I have no words to say aside from... shit. I am thankful for my life. Rest peacefully, Jonathan.

[@gautamkc]

Thank god its not me! Right?

[@whyumadbro2163]

Daniel Romero he died?, omg I’m so sad I mean he didn’t live his life to the fullest I’m just happy I don’t have that dosease

[@trisalty1172]

Majestic Mattie bs

[@johnpotatogaminggr900]

@@trisalty1172 Wdym bs he might be telling the truth I have EB too

[@trisalty1172]

JohnPotatoGaming gr yeah now that you responded I realized how stupid that was to say

[@BruceLeefromthegrave]

I guess this means I don't have anything to complain about my life.

[@dyingsun23]

Don't want Shadenfraude makes me ashamed of myself for complaining about the 'flu :/ Puts things in perspective a bit.

[@HalcyonVoid]

Don't want Shadenfraude Saying one can not complain because someone has it worse is like saying You cant have it good because someone has it better.

[@LorenzoStroe]

Derpy Gaming Highlights www.reddit.com/r/quotes/comments/1y59mu/telling_someone_they_cant_be_sad_because_others/ The author is unknown tho

[@BruceLeefromthegrave]

***** You're the ass. I'm against people who want to feel superior,.

[@BruceLeefromthegrave]

***** What was the purpose of "it's part of being complaining" in your comment?

[@johnyboy268]

I think im just gonna stare out the window for the next hour or so

[@tommaniacal]

Johnny Escoto I'm just gonna water my lawn for the next week or two. Props if you can tell me what that's from

[@ONOBITCH]

+Tommaniacal I think I recall PBG saying something like that in his Darkseed review..

[@tommaniacal]

SuperUndeadDave You sir, get double props. Not only is that from darkseed, but you also mentioned PBG's review of it. Good job man ;)

[@colonelvolgin5029]

Tommaniacal Mike Dawson. Master of ring toss.

[@NoiseKidd]

Tommaniacal please be sarcastic

[@sakshigawande733]

The human skin has two layers: outermost layer epidermis below dermis. Normally there are protein anchors between these two layers that prevent them from moving independently from one another (shearing). In Epidermolysis bullosa, the two skin layers lack the protein anchors that hold them together, resulting in extremely fragile skin-even rubbing or trauma will separate the layers of the skin and form blisters and painful sores. Sufferers of EB have compared the sores with third-degree burns. Unmatchable strength and courage this boy had! Hats off. Also your mother deserves great respect for the love, care and nursing she provided. Rest in peace Jonathan.

[@2degucitas]

Thank you for the explanation.

[@kirbyolsen5941]

Sakshi Gawande second degree*

[@yoda5280]

Lil Nigga third degree*

[@natalina8593]

Sakshi Gawande this is so helpful when they explained it in the video I didn’t quite understand thank you for helping

[@KC-wi4km]

Man you must be a doctor or something

[@kelesa3968]

rest in peace jonathan ❤️

[@cantrustme6295]

Kelesa I Def just saw that and came here I actually had this in my saved videos from a while ago

[@stabbedtosleep]

omfg he died????

[@ScottHedley]

Ya yesterday :(

[@tmoney9539]

Scott Hedley So sad.....😞

[@Lalvon_Zelpharr]

He died of respiratory failure, it's a goddamn shame well at least he's not suffering any more:(

[@HowardPinsky]

It breaks my heart seeing kids like Jonathan in this kind of pain, but his personality and attitude towards life is inspiring!

[@aoueyenyinyipierre-olier8845]

Et comme tu n'y peux pas, c'est mieux de devenir un adaptivore

[@nathanneufeld9724]

your a hero brother man god bless

[@MuhanadYOUNIS]

Man i do not know you are the young man in the video but you broke my heart. I wish that we can do some thing about that illness one day . Best regards to you and thank you for sharing

[@rickgray8905]

Agree

[@aliciadeighton8798]

Rick Gray totally agree

[@UntitledKirk]

He seems like a really smart kid for his age.

[@PepsiSSB]

UntitledKirk When we go through pain we learn fast. I think that says something about him.

[@TheChallengers6669]

UntitledKirk is he 15?

[@jamesperrin8619]

The Challengers He's 14 i think

[@MisterEric]

UntitledKirk He speaks better than me.. haha

[@HeyitsTom999]

UntitledKirk Yeah he seems so worldly. But then that bit where's the mother is putting the bandages on his back and he's just squeezing that pokemon plushie and trying to control his breathing... Goddamn.

[@Kari2025]

Very sad to hear about his passing. He was so intelligent and soft spoken during this interview.

[@kimnamjoonkimseokjinjinmon9255]

RIP Jonathan Pitre 2000-2019

[@Tarasbasement]

2018* not 2019

[@sevencoleman1046]

No one should have to go through that pain

[@supraguy4694]

Seven Coleman this is a fairly unpopular opinion, but this is a reason why I support the choice of abortion. Even if I wanted to have a kid, if I learned that they were going to have a life of pain and hardship, I would want to prevent that experience. It's sad, but personally I would rather not exist at all than exist in misery.

[@gagepercival2417]

***** Although i do strongly agree, im not sure if its possible to detect this defect early enough. plus being such a rare disease, i dont know if they'd even check for it.

[@AZ-nu8bq]

***** They probably cannot detect skin problems in the womb, and even if they could, it would be too late for abortion.

[@sovereign4045]

***** That should be the only excuse to get an abortion. i see some people supporting abortion even if the mom just cant take the responsibility. or because they feel they're still young and want to party more and not lose their figure.

[@zenzekaleo]

Ever heard of cluster headaches those are way worse

[@skatensanta]

Oh my god I am in tears.

[@topkev]

Squiggles McJiggles is that tears Ontario, or tears california?

[@bikerox]

Squiggles McJiggles so much

[@loserman123able]

MiracleFruitClock and then there's this guy ^

[@mther9187]

MiracleFruitClock Sorry dude, some of us have souls.

[@ubs16]

Same... Poor kid man.. God I wish there was a cure for this

[@tommyscully9970]

I cant imagine the torture that kid went through every day of his life it’s truly heartbreaking.

[@parkypro9490]

This kid was an absolute beast, RIP JONATHAN😭

[@splinterbyrd]

And I suppose it was impossible for anyone to even cuddle him😢

[@innnernetz]

If I ever have a "bad" day, I go back to this video to put me back in reality. Such a strong and brave young man.

[@CynicalAlco]

Who the fuck is chopping onions in here?

[@kx4445]

Same here

[@darreanturner1209]

lmfao its ok bro your not alone

[@0301jazz]

***** hahah how funny why are you criticizing other people for having their own emotion about something? People's emotions are not the same, and if you don't feel the same with other people who are more emotional than you, then who are you to judge everyone for having their own emotions about something? And I think it's not weird or pussy for people having their own emotions. That makes us human.

[@itendj5386]

IKR? I was crying the whole time :-O

[@Batman-cw5cr]

*****Do You See That Black Spot on Your Chest Thats Were Your hearts Supposed To be At BITCH

[@laneymcnamara3266]

I hope in another life you can be the athlete you were destined to be. Rest in peace Johnny 😞❤️

[@tschindel9650]

This kid inspired many people including myself. A special child that had so much against him but still stayed positive. Rest In Peace to a true angel

[@gooberpeas535]

T Schindel Yes. His personality was way better then the angry atheists here in the comment section that tell others to go...you know what to themselves.

[@lwh6]

taking care of a child with painful condition must be hard, but teaching him to have such a positive energy towards life is even harder his mother must have done an amazing job

[@harrymoore1908]

I wish all of us could just take a little bit of the pain, so he could be better

[@Redrush11]

My thoughts exactly

[@briansefring4981]

amen.

[@greathoonta3461]

Not just him. All people with this disease.

[@DannyL87]

Well I wasn't expecting to cry today ...

[@amberhall1288]

oakley radarlock I wish I could say that. I seem to find something that gets in the feel every single day. Haha. I’m a crybaby I guess

[@shotdunyun835]

I hate thinking such a sweet child had to fight against so much pain everyday... Even if i didn't knew him presonally, i am sure he was a real angel, may he rest in peace, such an inspiration. Even for a 24 yo like me...

[@louisa7042]

this is one of the bravest kids i've ever seen, and why has he got braces doesn't that hurt even more?

[@ArtemysNyx]

Louisa van den Brink I'm sure the pain of the braces is nowhere near the level of pain from his condition. I'm sure that it is a nonissue.

[@louisa7042]

True, but i can imagen that he would appreciate every reduction of pain and as braces can also cause woonds inside a healthy person's mouth....

[@alliem8700]

Louisa van den Brink EB is a connective tissue disorder, so I'm going to make a guess, based on my knowledge of my own condition. Our main issue is defective collagen, which leads to problems with enamel, but also teeth that tend to migrate and crowd more easily. I can only assume that this would cause extensive destruction of his gums. I actually went to see my dentist the other day because I thought I had numerous cavities. Apparently I don't, but the significant pain is caused by the fact that 1) my teeth rub against each other causing little breaks (already had 5 taken out and several years of braces), and 2) my teeth are slowly "falling" inwards, causing gum recession and root exposure. I wouldn't be surprised if he was dealing with/trying to prevent a similar situation.

[@thomasdamon4500]

***** I have EDS as well, it's amazing how I thought of my syndrome to be bad even though there are people like this. Nice to find someone with EDS who is an inspiration.

[@zulemaimperial1300]

*****

[@Kimbumbala]

Jesus Christ. I'm supposed to be studying for finals and now I'm crying in the fucking library.

[@copacetic9018]

Kimbumbala Get off youtube and get back to work!

[@RonPaulRevolution500]

Kimbumbala Lol. Don't worry.. It's now okay for hipsters to cry in public. I'm not too sure about black hipsters though.. Might be pushing it =p

[@aubreyaragon988]

The Ottawa Senators are my favorite team in the Eastern Conference Division not just the Hockey but their support system for Jonathan Pitre and keeping his legacy alive. That means alot is why I love the team so much. RIP Jonathan Pitre.

[@juanelcuh3209]

5:49 when his eyes rolled from pain I cried

[@Nrod1332]

We can see the video with our own eyes no need to ruin it for the rest, idiot

[@Brennie4HOCKEY]

The fuck is this strange liquid running from my eyes?

[@SomeGuy_Somewhere]

Brennie4HOCKEY blood get a doctor, or a priests... It might be a demon

[@aiden3373]

Brennie4HOCKEY To the gallows!

[@malvinbaez1209]

Brennie4HOCKEY These nuts.....HAHAHAHAHA got eemmm got emmm

[@69PoloW69]

***** aren't u funny, batty boy :)

[@SomeGuy_Somewhere]

***** batman

[@cheeriototoro8063]

Bless him :'( holding his little Charizard toy for comfort :(

[@aliceinchainslover]

Cheerio Totoro 😭😭

[@paullemieux1346]

That makes me cry every time I see it

[@iRedtracx]

I don't understand much but I cry :(

[@KQuinn672]

So sorry u suffered be at peace!

[@Nrod1332]

WE CAN SEE IT WITH OUR OWN EYES STOP PUTTING THESE DUMB ASS COMMENTS KID

[@Jam4xp1]

Rest in peace you absolute legend :(

[@amberhall1288]

Something about this child’s voice touches my heart. You were so brave and strong, Johnathan. ♥️ You’re pain free now sweet boy. His parents have to be so proud.

[@thecreedslair]

Yeah I think I know what your saying, He is 14 but he sounds 6.

[@aueier]

@@thecreedslair …???

[@thecreedslair]

@@aueier You think he sounds 14?

[@aueier]

@@thecreedslair it’s just disrespectful of u to say that.

[@thecreedslair]

@@aueier Sounds like a you problem

[@Investirane.BG1]

I hope they find a cure soon

[@Heibe]

Mark B It's a chronic condition, it can be treated to make life easier but not cured.

[@sinephase]

Heibe Not true, if they're able to get genetic therapies working.

[@daydrindaey3352]

:)

[@conormcmaygregor5708]

Heibe Remember that flying was once only for birds, and that space held only the stars. Never lose hope man.

[@christianlapasen9210]

Mark B there is a cure. doctors know the problem, they will find the solution.

[@Nick-uv5nl]

This kid is so fucking cool.

[@jessejammin5888]

Nick F This guy is absolutely amazing.

[@nford2083]

Jesse Jammin I agree

[@sssssfGify]

Nick F Kid is a fucking champion. What a awesome awesome kid.

[@amateursportscards7317]

I’m a grown man, and I’m not afraid to admit I cried during this. I thought about my son many times throughout this, and how lucky he is to not go through what this kid went through. What a warrior

[@user-fu5cd8bp1v]

I cried watching this. Everyday I complain about many things in my life but people like this make me realize how lucky I am. He is the strongest boy I've ever seen. Bless his soul.

[@PEAHATER3]

this boys soul made me cry

[@PEAHATER3]

fierce syd in a good way

[@gavinsingh3996]

+fierce syd 😢

[@jaydensprivatechannel4082]

100TH LIKER. Also please don't cry.

[@amberhall1288]

fierce syd Yes... exactly. His soul...

[@bu467]

I also had a rare skin condition, but nothing to this severity, I can still play sports and that, nothing but respect for this kid, shows how well off I really am, would love to meet him!

[@xXxMCmanxXx]

Bryce Unrau was it similar to this one?

[@konata2893]

Bryce Unrau Psoriasis? That's what I have. It's at least manageable with medication and good sunlight. This? I couldn't live with this.

[@bu467]

its called nethertons syndrome, which is a form of Icthyosis, i just found out what i actually had a couple years ago

[@brama100]

Bryce Unrau Icthyosis is, IMO, worse than what this kid has. I know there's different forms of it, but I've seen the worst cases on YT. I hope you're doing OK.

[@KwniStewart]

He's such a sweetheart. So adorable

[@yokoumiko7108]

Omg, I didn't know he was not here anymore I saw this same video few years ago... Time pass so fast, and also people leaves us as fast as a gaze, rest in peace Jonathan, your story inspired me long time ago, now with anxiety problems and suicide thoughts, I come back to this interview and you continue to give me the example of force and reasons to live. Rest in peace, dear inspiration angel.

[@ftme387]

I felt so sad when he was just holding his charmander plushy

[@edwardm8453]

It was a Charizard just letting u know

[@dfootball2384]

+Edward M really come on

[@edwardm8453]

Dfootball xD I couldn't resist the auto-correct side of me took over

[@BvckGames]

Ft Me oh nooooooo

[@letttylu]

:"( so sad ... he is just a kid !

[@gonzalesrafael22]

oh my god. I cant even watch this. as a father, I couldn't imagine having my child go through this. my heart goes out to this kid and his family. I wish there was something I could do or offer.

[@okidokey96]

You can always donate to organizations that's researching this particular disease or help raise awareness :)

[@seyitcansenpinar233]

Atleast you are a good father. Mine wasn't but during this video I forgot it.... As a child I won't be in that childs budy.... It hurts me even to think about it! He is strong..... I couldn't resist all this pain...

[@firewalkerg11]

what a courageous boy. I cannot stop crying. May his soul rest in peace now. Love & blessings to his amazing and brave Mom.

[@nerfdude6312]

He would be 19 today rip I hope you can play hockey in heaven. I’m so confused why are there dislikes?

[@tylerbruno07]

Probably people who are dislike the fact that they recorded him

[@nfa549]

they were crying and couldn’t see the like button

[@liamhaines4573]

Go away fortnite kid

[@FleukYT]

@@liamhaines4573 bro wtf did he do?

[@capybaralvr]

watching his eyes roll back as hes taking off the bandages was heart breaking

[@TheExecutoriscoolerthanyou]

bralyn more like heart warming

[@michaelaradke1987]

The Executor what's wrong with you?

[@TheExecutoriscoolerthanyou]

Michaela Radke I don't think anything is.

[@michaelaradke1987]

The Executor then why'd you say his pain was heart warming?

[@TheExecutoriscoolerthanyou]

Michaela Radke because it was heart warming. It was hilarious.

[@nesta4969]

This kid is literally my hero..

[@THEGAMER-fo4ne]

Nesta how

[@ivonotei]

Johnathan is such an inspiring, extraordinary child. We really should be thankful if we are healthy

[@4thgod]

He's dead, he lived a great life. I remember watching this and feeling so bad, I hope he's having a good life up there. R.I.P.

[@alansmithee4150]

This poor little sweetheart has to go through all *this* pain... yet *I'm* sitting here on my a$$ being totally useless n physically okay... that really doesn't seem fair... 😢

[@farhanzainal3558]

Ikr

[@THEGAMER-fo4ne]

Alan Smithee it's not your fault that this kid has that desease, so really your not useless at all, and for all we know this could be fake

[@JackMeoff46]

Alan Smithee and on top of that you're gay

[@teacherdavid--eatplaylearn5013]

you can live out your potential and God's will ...😆 stop sitting and start doing the GOOD thing! 😉 God bless you!! 😇

[@elysiumaster486]

THE GAMER 27 he died

[@Chiqsan]

Everytime I bitched about a single. solitary. ONE and only pimple....SHAMED! Bless this young boy, I pray that they find a solution for his condition.

[@mcrettable]

it's normal to be mad at a pimple if your skin is average

[@rebeccadruery8843]

CHiiQ I just got new this boy died

[@elysiumaster486]

CHiiQ this boy died

[@laila-dr1uu]

My Chemical Unicorn other people have it too.

[@DevinedParadise]

he was way too precious for this earth. rip precious angel

[@yeetuspeetus6598]

RIP bud, enjoy the ice rink in the sky 🕊

[@Camateur]

Thanks TSN.. hit me right in the feels.

[@lord_loopii6821]

please, that's an uppercut to the feels

[@mcPeekBetweentheReeds]

Yes,

[@Jacktionman101]

***** Oh wow, Fairy Tail reference xD

[@alexmcgraw6266]

theCamateur May Allah help him , its a test on this earth, he is gonna go to the heaven for sure.

[@suomynona]

theCamateur I seen this going back ............. not fair i see it twice and its all new here

[@Garcia-elf]

but hey, they say god works in mysterious ways.

[@calebwhite5859]

Amen. yes he does. everyones put on this earth for a purpose. just by not just surviving but living life to the fullest and showing other people is his purpose. And he is doing a great job. Prayers for him.

[@Garcia-elf]

haha guess the sarcasm was lost in translation

[@donnamore8855]

A. G-E Nope, not in the translation

[@starcow17]

A. G-E It was lost in the stupidity.

[@starcow17]

A. G-E The interwebs is a painful place xD Filled with stupid people.

[@petertaivassalo4489]

This kid is a real warrior! Hit me right in The feels. Not because of his condition but because of the spirit he got and how he deals with it!

[@kayleenjurski1954]

Rest In Peace, sweet boy ❤️

[@dantecaruso6910]

This kid has a fucking heart. I cant believe people take so much for granted. When i saw this video i wanted to do something with my life.

[@rihannasbitchx3]

Now this is ACTUAL COURAGE

[@roofpizza1250]

We miss you Jonathan. May your pain finally be put to rest.

[@Anonymous-gh6il]

That kid is a hero,plus he gets bonus points for being a sens fan Rest in Peace bro

[@shadezentertainment9877]

God bless you Jonathan. You did nothing wrong at all, yet you were born with such a terrible condition. But, everything happens for a reason. Hopefully, you will survive a lot longer than only 25 years. Good luck and best of my prayers to you, my hero.

[@dfootball2384]

I think I'm in pain from a condition called club feet I'm in 2 casts right now but I feel like the biggest wimp ever I'm got so emotional 😢😢😢

[@joselinrodas8758]

me to dude! i was so sad....

[@aidantait9107]

+Kynan's Music dude chill out he is a poor kid living with EE, Got to be respectful to him, he has dream and make sure he can complete it.

[@JJ_EETFUK]

This kid is stronger than you can ever imagine. His entire life is pain and he goes through it and has the will and courage and strength to get up every morning. So much respect for this guy

[@r2micro373]

he was so sweet. rip.

[@Aravestia]

As a person with ezcema that hurt when showering, the bravery of this boy is tremendous i cannot imagine his pain. This boy is a hero

[@e.bassett3922]

This kid is inspirational. I'm in fucking tears. I am never going to complain about ANYTHING trivial ever again.

[@TheGoodDoctorSRB]

A year has passed, how has it been? :)

[@kamilahgriggs515]

My heart breaks for him and his mother. He is sentenced to a life of pain and so is she.

[@playaplaya162]

I think without a doubt people with eb are the toughest people on the planet hands down RIP johnathan ur legacy will live on forever

[@ryankoehler8038]

This is what real strength looks like. Dude is a fuggin Beast of Human!

[@IzludeTingel]

They say it feels like 3rd degree burns all day long. There are trial treatments for this now, some have been cured to the point where they only get mild abrasions. They get marrow transplants and a new gene takes hold to mitigate the defective ones. The skin anchors much better than it used to. The only thing though, they have to remain completely motionless during the treatment (a few months) to prevent blistering(chance of infection).

[@Squalla1]

+Izlude Tingel Any sources for that?

[@Squalla1]

+Squalla1 Found this on Wikipedia: "As of 2008 clinical research at the University of Minnesota has included a bone marrow transplant to a 2-year-old child who is one of 2 brothers with EB. The procedure was successful, strongly suggesting that a cure may have been found. A second transplant has also been performed on the child's older brother, and a third transplant is scheduled for a California baby. The clinical trial will ultimately include transplants to 30 subjects.[14] However, the severe immunosuppression that bone marrow transplantation requires causes a significant risk of serious infections in patients with large scale blisters and skin erosions. Indeed, at least four patients have died in the course of either preparation for or institution of bone marrow transplantation for epidermolysis bullosa, out of only a small group of patients treated so far."

[@8bitZach]

+Izlude Tingel true, but it's probably different for a genetic diesease :(

[@SamBassComedy]

Too bad cellular research isn't developed enough to help this kid. He is so brave and admirable. Lost some liquid watching this.

[@AZ-nu8bq]

Samuel J. Bass He's only 14 years old. There's no saying what the future holds.

[@DaytonaRoadster]

Alex Zhou yeah but he wont live that long, no one with that condition lived over 35, most dont get out of their 20s, the skin gets cancerous most of the time

[@Frommerman]

Samuel J. Bass "We're working on it" ~ Science

[@SamBassComedy]

Frommerman Thanks Science!

[@frazerbldes]

Dr.Micheal Ambrose Weird and inappropriate statement.

[@GinaZalner]

I was a sobbing mess watching this but this boy was a true hero to all children suffering from EB. He was much stronger than all of us put together 😢😔

[@kittychan3992]

Rest In Peace johnathan ❤️ you will be in our hearts and will forever be missed ilysm 💕

[@maddiefreire1740]

He should've won the courage award not Caitlyn (it just reminded me of that) . This kid is my hero , he's touched my soul like no one else has. He is just a beautiful human being.

[@THEGAMER-fo4ne]

Maddie Freire he's not beautiful

[@kristenk6898]

Maddie Freire

[@Gamerswag-pl4yy]

THE GAMER 27 GO TO HELL BECAUSE U SAID THAT

[@thezombienightmares3175]

Do yourself a favor... Don't scroll through the comments.. It only takes away from this child's message... .....It's truly sad how people always make it about themselves and their beliefs.

[@ThePnguin]

***** Every video seems to lead to a discussion on religion :/

[@20RandumGurlyGurl08]

***** I am in complete agreement, but I did scroll through some of the comments and honestly got a laugh out of the tone of the negative ones. While I do not applaud ignorance, I do find a great deal of humor in those who seem to have wrapped themselves in it. I tried really hard to phrase in a way that did not resolve to name calling, but it became more difficult than it was worth. :-)

[@isabellaperez326]

thank u

[@LeeahQueen]

I just remembered me watching this as a young child and I just learned you’ve passed away rest well in peace 🤕🤕

[@_Inesitaa_]

Almost everyday I remember of this boy and cry thinking in his horrific agony I decided to let him go because I believe there's another life besides this. Once I heard he died, I cried so much and yelled god this is just so unfair and overthinked and was like I couldn't get his voice on the interviews out of my mind.... I know i don't even know him, but i have something in my heart. It is love to people around me. If u don't have this, u life doesn't worth at all. RIP sweet Johny. At least, you have a better life there where u are, no more pain, only love and peace. ❤

[@ParkBomsKing]

He is very brave. May the God bless him.

[@LeviAckerman-ln8kt]

You mean the god who also punished him with that disease?

[@countercapp635]

Levi Ackerman man you kinda just walked into it. I would rather have him believe what he believes, end of story. Even tho I don't agree, let him be.

[@countercapp635]

VidalSlayiin I can disagree but have a nice day sir. I don't want to ruin it

[@Bloodsoldr]

Yeah, he wanted him to get stronger alright. Now the kid's dead.

[@mondoman5617]

You'd figure your imaginary god would bless him by not torturing him in the first place.

[@atticuslewis6715]

my best friend had the same condition he does she passed away a few years ago at the age of 27

[@riya4714]

Atticus Lewis I’m so sorry ❤️

[@reeceboyle1905]

R I P anyone dying before 50 is really tragic but at least she had a friend

[@MeganMichelle_official]

Rest in peace

[@cryptgamer1113]

Rip

[@danieldilawri2711]

Atticus Lewis 🙏🏼🙏🏼🙏🏼

[@auGigaShaw]

Imagine wanting to play sport and loving sport but not being able to do it i would go insane, i dont want hear his in heaven theirs no such thing, a life gone to soon RIP no more pain

[@yotday]

What a beautiful human. Thank you for your inspiration, Jonathan.

[@TheMadThresher]

Tougher then I could ever hope to be. Kid's a freaking gladiator, by both his physical tolerance of paid, and his emotional strength.

[@TheMadThresher]

TheMadThresher Pain*

[@10tumms]

As an Ottawa fan and a young hockey player every game I win will be for this kid

[@maxwell_5oh]

No words can describe the toughness of this man... stay strong buddy.

[@jgm9807]

I cry everytime i see this cause he suffered and it breaks my heart seeing kids and people suffering Rip Johnathan 😭😭😭

[@ana610]

can't stop crying... i'm shocked... this boy is a hero, and his mom, who knows what emotions are behind that brave face.. this is incredible.. i'm seriously in shock

[@air6665]

my whole body feels really weird all of the sudden

[@wii1245]

Feeling disturbed by this video, eh?

[@jannetgantes2006]

Arief Imran Roslan ahh same

[@nzlkicks0343]

Arief Imran Roslan exactly

[@Ghostcupcake1]

My skin feels like it's .. Falling off. Ahhhhh

[@dudson6401]

Arief Imran Roslan same

[@dougb4835]

I marvel at the willpower, courage and optimism this young man had. I hardly ever tear up but this had me crying. Nest time I'm about to complain about some mundane event I'm going to remember this kid.

[@geezcarter]

Jonathan was wise beyond his years. What a beautiful boy. Hope you’re playing hockey somewhere right now!

[@craigcurlee6428]

If I could, I would give him my body so he could be a healthy kid....He is beyond an inspiration. God bless him....

[@Dexyu]

+craig curlee bull shiet. Its a noble gesture, but a gesture is all. When it comes down to it, your self preservation instincts would kick in.

[@Dexyu]

Tyson Smith Bullshiet. You watch to many movies dude.

[@THEGAMER-fo4ne]

Dexyu if you saying it's game then I agree with you 100%

[@Benjamin-om3ih]

Really disappointed to see these comments but i guess i cant expect much more from the internet. What a wonderful story, This guy is so brave the way he faces the world and has more guts that most people i know. Much love brother

[@kyssedbyfyre915]

My husband and I, both chronic pain suffers are raising twin boys, aged 9 yrs. I was telling them about Jonathan tonight as we were talking. They are such amazingly compassionate beings from what they have seen their father and I go through. Always helpful and kind. Always sharing and thinking of ways to brighten the world around us. I have a feeling they will want to help people who are hurting. Pain is a necessary evil of this biological existence... Yet due to the amazing power of the human Spirit, some truly BEAUTIFUL things can still spring from even the darkest depths of it.

[@user-fx6ng4ck4y]

I have heard about several conditions and this condition just breaks my heart every time i try to learn more about it !! His screams made me wanna cry ! I can not stand watching his pain even when he eats! Then i learned he is no longer among us....rest in peace you strong fighter ...you are a hero!

[@FlyingOverTr0ut]

What a great kid.

[@michinakasone5276]

WE HAVE TO START A COMMITTEE AND GET DONATIONS TO IMPROVE LIVES AND PROMOTE RESEARCH, WE MUST!!!

[@tmoniejordan4094]

Cat Lover Yes I agree

[@thatguywhoplaysgames4278]

Cat Lover No (JK)

[@THEGAMER-fo4ne]

Don't waste your money

[@beautybyzaii5133]

Some things just can’t be cured......money doesn’t solve everything

[@linzeepopable]

People need to go through genetic counseling before having babies, that's the only way to prevent babies being born with this condition. Both parents have to have a copy of the rare gene that causes this in order for babies to be born with it.

[@BigIslandMNMinnetonka]

Jonathan is one of the strongest kids I have ever seen. Amazing Young man.

[@mikeykm1993]

I’m not crying, you’re crying! What a fantastic young man.