The Butterfly Child | TSN Original

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  • Опубліковано 22 сер 2024
  • 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.

КОМЕНТАРІ • 4,9 тис.

  • @acornstairlift
    @acornstairlift 9 років тому +1266

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

    • @acornstairlift
      @acornstairlift 9 років тому +18

      Anything that doesn't imply being frail.

    • @Cavouku
      @Cavouku 9 років тому +8

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

    • @acornstairlift
      @acornstairlift 9 років тому +7

      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
      @spikef22 9 років тому +7

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

    • @motnurky7055
      @motnurky7055 9 років тому +4

      acornstairlift Tiger Child.

  • @kronosrocks2591
    @kronosrocks2591 9 років тому +2088

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

    • @dfootball2384
      @dfootball2384 8 років тому +7

      He is

    • @michaelmcnally8963
      @michaelmcnally8963 8 років тому +30

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

    • @michaelmcnally8963
      @michaelmcnally8963 8 років тому +6

      +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
      @CSSB72 8 років тому +9

      +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
      @SweetDemoness 8 років тому +2

      Igor S. Agree 3000%

  • @Caseyirl
    @Caseyirl 5 років тому +664

    “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.

  • @RissShot
    @RissShot 6 років тому +1338

    RIP Jonathan, hope you’re playing hockey in heaven

    • @gettindirty
      @gettindirty 4 роки тому +55

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

    • @Truels-qz7hp
      @Truels-qz7hp 4 роки тому +17

      Wait he died?

    • @makernewb
      @makernewb 4 роки тому +5

      😭DIP Jonathan I pray for him in heaven 🙏

    • @sjcrowley19
      @sjcrowley19 4 роки тому +5

      He died?

    • @sjcrowley19
      @sjcrowley19 4 роки тому +1

      Hope he’s the Wayne Gretzky of heaven

  • @DHS9
    @DHS9 6 років тому +925

    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
      @guineapigthegames2944 5 років тому +3

      Didnt get the live yet...

    • @airgregone
      @airgregone 5 років тому +29

      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
      @guyfieri5468 5 років тому +18

      If only God prevented him from having this disease.

    • @dimitriousslovenski8883
      @dimitriousslovenski8883 5 років тому +35

      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
      @christianchimirri6137 5 років тому +27

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

  • @DanielRomero
    @DanielRomero 6 років тому +1309

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

    • @gautamkc
      @gautamkc 5 років тому +4

      Thank god its not me! Right?

    • @whyumadbro2163
      @whyumadbro2163 5 років тому +6

      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
      @trisalty1172 5 років тому

      Majestic Mattie bs

    • @johnpotatogaminggr900
      @johnpotatogaminggr900 4 роки тому +3

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

    • @trisalty1172
      @trisalty1172 4 роки тому +1

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

  • @sakshigawande733
    @sakshigawande733 6 років тому +364

    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
      @2degucitas 5 років тому +9

      Thank you for the explanation.

    • @kirbyolsen5941
      @kirbyolsen5941 4 роки тому +1

      Sakshi Gawande second degree*

    • @yoda5280
      @yoda5280 4 роки тому +2

      Lil Nigga third degree*

    • @natalina8593
      @natalina8593 4 роки тому

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

    • @KC-wi4km
      @KC-wi4km 3 роки тому

      Man you must be a doctor or something

  • @kelesa3968
    @kelesa3968 6 років тому +798

    rest in peace jonathan ❤️

    • @cantrustme6295
      @cantrustme6295 6 років тому +6

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

    • @stabbedtosleep
      @stabbedtosleep 6 років тому +11

      omfg he died????

    • @ScottHedley
      @ScottHedley 6 років тому +12

      Ya yesterday :(

    • @tmoney9539
      @tmoney9539 6 років тому +4

      Scott Hedley So sad.....😞

    • @Lalvon_Zelpharr
      @Lalvon_Zelpharr 6 років тому +23

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

  • @laswap1
    @laswap1 9 років тому +1091

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

    • @GloriousXoyas
      @GloriousXoyas 9 років тому +24

      Rowan Williams Go work out then.

    • @hollowearthreality
      @hollowearthreality 9 років тому +76

      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

    • @nicknickerson3049
      @nicknickerson3049 9 років тому +12

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

    • @90kiperberg
      @90kiperberg 9 років тому +9

      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

    • @dune0015
      @dune0015 9 років тому +1

      Rowan Williams Its all good Rowan Williams i got your back brother

  • @johnyboy268
    @johnyboy268 9 років тому +1395

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

    • @tommaniacal
      @tommaniacal 9 років тому +5

      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

    • @tommaniacal
      @tommaniacal 9 років тому +2

      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
      @colonelvolgin5029 9 років тому +1

      Tommaniacal Mike Dawson. Master of ring toss.

    • @NoiseKidd
      @NoiseKidd 9 років тому +1

      Tommaniacal please be sarcastic

    • @variares1114
      @variares1114 9 років тому +2

      Kaneki

  • @Kari2025
    @Kari2025 6 років тому +158

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

  • @parkypro9490
    @parkypro9490 4 роки тому +94

    This kid was an absolute beast, RIP JONATHAN😭

    • @splinterbyrd
      @splinterbyrd 5 місяців тому

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

  • @UntitledKirk
    @UntitledKirk 9 років тому +515

    He seems like a really smart kid for his age.

    • @PepsiSSB
      @PepsiSSB 9 років тому +46

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

    • @TheChallengers6669
      @TheChallengers6669 9 років тому

      UntitledKirk is he 15?

    • @perrinii
      @perrinii 9 років тому +4

      The Challengers He's 14 i think

    • @MisterEric
      @MisterEric 9 років тому

      UntitledKirk He speaks better than me.. haha

    • @HeyitsTom999
      @HeyitsTom999 9 років тому +26

      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.

  • @HowardPinsky
    @HowardPinsky 9 років тому +393

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

    • @aoueyenyinyipierre-olier8845
      @aoueyenyinyipierre-olier8845 9 років тому

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

    • @nathanneufeld9724
      @nathanneufeld9724 9 років тому +2

      your a hero brother man god bless

    • @MuhanadYOUNIS
      @MuhanadYOUNIS 9 років тому +1

      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
      @rickgray8905 9 років тому

      Agree

    • @aliciadeighton8798
      @aliciadeighton8798 9 років тому

      Rick Gray totally agree

  • @tommyscully9970
    @tommyscully9970 5 років тому +90

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

  • @tschindel9650
    @tschindel9650 6 років тому +135

    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
      @gooberpeas535 5 років тому +2

      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.

  • @innnernetz
    @innnernetz 7 років тому +248

    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.

  • @BruceLeefromthegrave
    @BruceLeefromthegrave 9 років тому +412

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

    • @dyingsun23
      @dyingsun23 9 років тому +4

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

    • @HalcyonVoid
      @HalcyonVoid 9 років тому +21

      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
      @LorenzoStroe 9 років тому +1

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

    • @BruceLeefromthegrave
      @BruceLeefromthegrave 9 років тому

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

    • @BruceLeefromthegrave
      @BruceLeefromthegrave 9 років тому

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

  • @laneymcnamara3266
    @laneymcnamara3266 6 років тому +120

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

  • @kimnamjoonkimseokjinjinmon9255
    @kimnamjoonkimseokjinjinmon9255 4 роки тому +46

    RIP Jonathan Pitre
    2000-2019

  • @juanlee337
    @juanlee337 9 років тому +485

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

    • @bobbobby1892
      @bobbobby1892 9 років тому +12

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

    • @CakeBossan
      @CakeBossan 9 років тому +10

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

    • @GoldenSodaXbox
      @GoldenSodaXbox 9 років тому +9

      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
      @eternalposer1955 9 років тому +7

      ***** 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
      @Troxxity 9 років тому

      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?

  • @sevencoleman1046
    @sevencoleman1046 9 років тому +406

    No one should have to go through that pain

    • @supraguy4694
      @supraguy4694 9 років тому +59

      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
      @gagepercival2417 9 років тому +19

      ***** 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
      @AZ-nu8bq 9 років тому +1

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

    • @sovereign4045
      @sovereign4045 9 років тому +9

      ***** 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
      @zenzekaleo 9 років тому +1

      Ever heard of cluster headaches those are way worse

  • @shotdunyun835
    @shotdunyun835 6 років тому +29

    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...

  • @amberhall1288
    @amberhall1288 6 років тому +40

    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.

    • @peacesellsbutimbroke
      @peacesellsbutimbroke 3 роки тому

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

    • @aueier
      @aueier 2 роки тому

      @@peacesellsbutimbroke …???

    • @peacesellsbutimbroke
      @peacesellsbutimbroke 2 роки тому

      @@aueier You think he sounds 14?

    • @aueier
      @aueier 2 роки тому +1

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

    • @peacesellsbutimbroke
      @peacesellsbutimbroke 2 роки тому

      @@aueier Sounds like a you problem

  • @skatensanta
    @skatensanta 9 років тому +475

    Oh my god I am in tears.

    • @topkev
      @topkev 9 років тому

      Squiggles McJiggles is that tears Ontario, or tears california?

    • @bikerox
      @bikerox 9 років тому

      Squiggles McJiggles so much

    • @grizzTX
      @grizzTX 9 років тому +19

      MiracleFruitClock and then there's this guy ^

    • @mther9187
      @mther9187 9 років тому +9

      MiracleFruitClock Sorry dude, some of us have souls.

    • @ubs16
      @ubs16 9 років тому +14

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

  • @lwh6
    @lwh6 9 років тому +80

    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

  • @aubreyaragon988
    @aubreyaragon988 4 роки тому +36

    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.

  • @amateursportscards7317
    @amateursportscards7317 Рік тому +9

    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

  • @CynicalAlco
    @CynicalAlco 9 років тому +427

    Who the fuck is chopping onions in here?

    • @kx4445
      @kx4445 9 років тому +2

      Same here

    • @darreanturner1209
      @darreanturner1209 9 років тому +2

      lmfao its ok bro your not alone

    • @0301jazz
      @0301jazz 9 років тому

      ***** 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
      @itendj5386 9 років тому

      IKR? I was crying the whole time :-O

    • @Batman-cw5cr
      @Batman-cw5cr 9 років тому

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

  • @Kimbumbala
    @Kimbumbala 9 років тому +100

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

    • @copacetic9018
      @copacetic9018 9 років тому +3

      Kimbumbala Get off youtube and get back to work!

    • @RonPaulRevolution500
      @RonPaulRevolution500 9 років тому +1

      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

  • @DannyL87
    @DannyL87 6 років тому +121

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

    • @amberhall1288
      @amberhall1288 6 років тому

      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

  • @user-fu5cd8bp1v
    @user-fu5cd8bp1v 6 років тому +10

    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.

  • @cheeriototoro8063
    @cheeriototoro8063 7 років тому +412

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

    • @aliceinchainslover
      @aliceinchainslover 7 років тому +1

      Cheerio Totoro 😭😭

    • @paullemieux1346
      @paullemieux1346 4 роки тому +2

      That makes me cry every time I see it

    • @iRedtracx
      @iRedtracx 4 роки тому +2

      I don't understand much but I cry :(

    • @KQuinn672
      @KQuinn672 3 роки тому

      So sorry u suffered be at peace!

    • @Nrod1332
      @Nrod1332 3 роки тому

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

  • @bu467
    @bu467 9 років тому +106

    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
      @xXxMCmanxXx 9 років тому +3

      Bryce Unrau was it similar to this one?

    • @konata2893
      @konata2893 9 років тому +2

      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
      @bu467 9 років тому +1

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

    • @brama100
      @brama100 9 років тому +4

      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.

  • @Jam4xp1
    @Jam4xp1 6 років тому +45

    Rest in peace you absolute legend :(

  • @juanelcuh3209
    @juanelcuh3209 5 років тому +25

    5:49 when his eyes rolled from pain I cried

    • @Nrod1332
      @Nrod1332 3 роки тому

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

  • @louisa7042
    @louisa7042 9 років тому +289

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

    • @ArtemysNyx
      @ArtemysNyx 9 років тому +30

      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
      @louisa7042 9 років тому +8

      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
      @alliem8700 9 років тому +14

      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
      @thomasdamon4500 9 років тому +1

      ***** 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
      @zulemaimperial1300 9 років тому

      *****

  • @harrymoore1908
    @harrymoore1908 7 років тому +214

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

  • @firewalkerg11
    @firewalkerg11 6 років тому +20

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

  • @KwniStewart
    @KwniStewart 6 років тому +17

    He's such a sweetheart. So adorable

  • @PEAHATER3
    @PEAHATER3 9 років тому +117

    this boys soul made me cry

  • @gonzalesrafael22
    @gonzalesrafael22 9 років тому +69

    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
      @okidokey96 9 років тому +11

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

    • @seyitcansenpinar233
      @seyitcansenpinar233 9 років тому

      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...

  • @yokoumiko7108
    @yokoumiko7108 Рік тому +10

    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.

  • @4thgod
    @4thgod 6 років тому +7

    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.

  • @nesta4969
    @nesta4969 9 років тому +39

    This kid is literally my hero..

  • @dantecaruso6910
    @dantecaruso6910 8 років тому +21

    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.

  • @ivonotei
    @ivonotei 6 років тому +11

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

  • @nerfdude6312
    @nerfdude6312 3 роки тому +16

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

    • @tylerbruno07
      @tylerbruno07 3 роки тому +2

      Probably people who are dislike the fact that they recorded him

    • @nfa549
      @nfa549 3 роки тому

      they were crying and couldn’t see the like button

    • @liamhaines4573
      @liamhaines4573 3 роки тому

      Go away fortnite kid

    • @FleukYT
      @FleukYT 3 роки тому +1

      @@liamhaines4573 bro wtf did he do?

  • @ftme387
    @ftme387 9 років тому +513

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

    • @edwardm8453
      @edwardm8453 9 років тому +53

      It was a Charizard just letting u know

    • @dfootball2384
      @dfootball2384 8 років тому +4

      +Edward M really come on

    • @edwardm8453
      @edwardm8453 8 років тому +10

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

    • @BvckGames
      @BvckGames 7 років тому +1

      Ft Me oh nooooooo

    • @letttylu
      @letttylu 7 років тому +3

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

  • @JJ_EETFUK
    @JJ_EETFUK 8 років тому +29

    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

  • @petertaivassalo4489
    @petertaivassalo4489 6 років тому +5

    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!

  • @Anonymous-gh6il
    @Anonymous-gh6il 2 роки тому +4

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

  • @Brennie4HOCKEY
    @Brennie4HOCKEY 9 років тому +261

    The fuck is this strange liquid running from my eyes?

    • @SomeGuy_Somewhere
      @SomeGuy_Somewhere 9 років тому +8

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

    • @aiden3373
      @aiden3373 9 років тому

      Brennie4HOCKEY To the gallows!

    • @malvinbaez1209
      @malvinbaez1209 9 років тому +4

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

    • @69PoloW69
      @69PoloW69 9 років тому

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

    • @SomeGuy_Somewhere
      @SomeGuy_Somewhere 9 років тому

      ***** batman

  • @capybaralvr
    @capybaralvr 8 років тому +156

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

  • @DevinedParadise
    @DevinedParadise 6 років тому +8

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

  • @Roof_Pizza
    @Roof_Pizza 6 років тому +9

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

  • @Camateur
    @Camateur 9 років тому +600

    Thanks TSN.. hit me right in the feels.

    • @lord_loopii6821
      @lord_loopii6821 9 років тому +6

      please, that's an uppercut to the feels

    • @mcPeekBetweentheReeds
      @mcPeekBetweentheReeds 9 років тому

      Yes,

    • @Jacktionman101
      @Jacktionman101 9 років тому

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

    • @alexmcgraw6266
      @alexmcgraw6266 9 років тому +7

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

    • @suomynona
      @suomynona 9 років тому

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

  • @Investirane.BG1
    @Investirane.BG1 9 років тому +133

    I hope they find a cure soon

    • @Heibe
      @Heibe 9 років тому +1

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

    • @sinephase
      @sinephase 9 років тому +10

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

    • @daydrindaey3352
      @daydrindaey3352 9 років тому

      :)

    • @conormcmaygregor5708
      @conormcmaygregor5708 9 років тому +22

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

    • @christianlapasen9210
      @christianlapasen9210 9 років тому

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

  • @GinaZalner
    @GinaZalner 4 роки тому +3

    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 😢😔

  • @yeetuspeetus6598
    @yeetuspeetus6598 3 роки тому +7

    RIP bud, enjoy the ice rink in the sky 🕊

  • @Chiqsan
    @Chiqsan 9 років тому +217

    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
      @mcrettable 6 років тому +1

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

    • @rebeccadruery8843
      @rebeccadruery8843 6 років тому +1

      CHiiQ I just got new this boy died

    • @elysiumaster486
      @elysiumaster486 6 років тому +1

      CHiiQ this boy died

    • @laila-dr1uu
      @laila-dr1uu 5 років тому

      My Chemical Unicorn other people have it too.

  • @kamilahgriggs515
    @kamilahgriggs515 8 років тому +34

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

  • @Aravestia
    @Aravestia 6 років тому +3

    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

  • @kayleenjurski1954
    @kayleenjurski1954 6 років тому +12

    Rest In Peace, sweet boy ❤️

  • @e.bassett3922
    @e.bassett3922 7 років тому +19

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

  • @shadezentertainment9877
    @shadezentertainment9877 8 років тому +58

    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
      @dfootball2384 8 років тому +1

      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
      @joselinrodas8758 8 років тому

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

    • @aidantait9107
      @aidantait9107 8 років тому

      +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.

  • @playaplaya162
    @playaplaya162 6 років тому +5

    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
    @ryankoehler8038 Рік тому +1

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

  • @rihannasbitchx3
    @rihannasbitchx3 9 років тому +29

    Now this is ACTUAL COURAGE

  • @alansmithee4150
    @alansmithee4150 8 років тому +433

    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
      @farhanzainal3558 8 років тому +4

      Ikr

    • @THEGAMER-fo4ne
      @THEGAMER-fo4ne 6 років тому +1

      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
      @JackMeoff46 6 років тому +3

      Alan Smithee and on top of that you're gay

    • @teacherdavid--eatplaylearn5013
      @teacherdavid--eatplaylearn5013 6 років тому +3

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

    • @elysiumaster486
      @elysiumaster486 6 років тому

      THE GAMER 27 he died

  • @kyssedbyfyre915
    @kyssedbyfyre915 3 роки тому +3

    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.

  • @_Inesitaa_
    @_Inesitaa_ 4 роки тому +4

    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. ❤

  • @Nick-uv5nl
    @Nick-uv5nl 9 років тому +149

    This kid is so fucking cool.

    • @jessejammin5888
      @jessejammin5888 9 років тому +7

      Nick F This guy is absolutely amazing.

    • @nford2083
      @nford2083 9 років тому

      Jesse Jammin I agree

    • @sssssfGify
      @sssssfGify 9 років тому +3

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

  • @maddiefreire1740
    @maddiefreire1740 9 років тому +90

    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.

  • @geezcarter
    @geezcarter 3 роки тому +1

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

  • @daniel_a-ir6mc
    @daniel_a-ir6mc 4 роки тому +1

    he was definitely a warrior/soldier in his past life. No regular person can go through that and still be so optimistic. He’s got the strength of 1000 men

  • @TheMadThresher
    @TheMadThresher 9 років тому +14

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

  • @craigcurlee6428
    @craigcurlee6428 8 років тому +75

    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
      @Dexyu 8 років тому +7

      +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
      @Dexyu 8 років тому +1

      Tyson Smith Bullshiet. You watch to many movies dude.

    • @THEGAMER-fo4ne
      @THEGAMER-fo4ne 6 років тому

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

  • @TopLaneFreightTrain
    @TopLaneFreightTrain 6 років тому +4

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

  • @kittychan3992
    @kittychan3992 6 років тому +8

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

  • @ana610
    @ana610 8 років тому +18

    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

  • @SamBassComedy
    @SamBassComedy 9 років тому +42

    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
      @AZ-nu8bq 9 років тому +1

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

    • @DaytonaRoadster
      @DaytonaRoadster 9 років тому +1

      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
      @Frommerman 9 років тому +2

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

    • @SamBassComedy
      @SamBassComedy 9 років тому

      Frommerman
      Thanks Science!

    • @frazerbldes
      @frazerbldes 9 років тому +4

      Dr.Micheal Ambrose Weird and inappropriate statement.

  • @donnahicks9661
    @donnahicks9661 Рік тому

    A young man that had so much strength and courage.he had great doctors and parents and others that never gave up on him.a true angel. Sweet kid

  • @thezombienightmares3175
    @thezombienightmares3175 9 років тому +30

    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
      @ThePnguin 9 років тому +4

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

    • @20RandumGurlyGurl08
      @20RandumGurlyGurl08 9 років тому

      ***** 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
      @isabellaperez326 6 років тому

      thank u

  • @Benjamin-om3ih
    @Benjamin-om3ih 9 років тому +6

    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

  • @Maverick-vv2wb
    @Maverick-vv2wb 3 роки тому +3

    Such a strong kid I think personally think he was the strongest kid ever to exist rest in peace Jonathan ♥️♥️♥️

  • @antonioakaaj7138
    @antonioakaaj7138 6 років тому +1

    And you guys think you have it though? This kid is mentally and spiritally more stronger then all of us combine, respect Jonathan.

  • @ParkBomsKing
    @ParkBomsKing 8 років тому +310

    He is very brave. May the God bless him.

    • @LeviAckerman-ln8kt
      @LeviAckerman-ln8kt 7 років тому +52

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

    • @countercapp635
      @countercapp635 7 років тому +3

      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
      @countercapp635 7 років тому +2

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

    • @Bloodsoldr
      @Bloodsoldr 6 років тому +12

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

    • @mondoman5617
      @mondoman5617 6 років тому +12

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

  • @10tumms
    @10tumms 8 років тому +8

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

  • @auGigaShaw
    @auGigaShaw 4 роки тому +2

    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

  • @r2micro373
    @r2micro373 6 років тому +10

    he was so sweet. rip.

  • @rhon715
    @rhon715 8 років тому +52

    What an amzingly strong and wise young man. We all cal learn alot from him. God bless him.

    • @soultulip2615
      @soultulip2615 8 років тому

      U got this have god bless u and your family for this

  • @michinakasone5276
    @michinakasone5276 8 років тому +73

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

    • @tmoniejordan4094
      @tmoniejordan4094 7 років тому +1

      Cat Lover Yes I agree

    • @thatguywhoplaysgames4278
      @thatguywhoplaysgames4278 7 років тому +2

      Cat Lover No (JK)

    • @THEGAMER-fo4ne
      @THEGAMER-fo4ne 6 років тому

      Don't waste your money

    • @beautybyzaii5133
      @beautybyzaii5133 6 років тому +3

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

    • @linzeepopable
      @linzeepopable 6 років тому +3

      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.

  • @LeeahQueen
    @LeeahQueen 4 роки тому +5

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

  • @iml3monyt521
    @iml3monyt521 3 роки тому +2

    “I’m not gonna stop anytime soon, I’m gonna keep going” RIP man, your legacy will always live on!

  • @air6665
    @air6665 8 років тому +167

    my whole body feels really weird all of the sudden

    • @wii1245
      @wii1245 8 років тому +13

      Feeling disturbed by this video, eh?

    • @jannetgantes2006
      @jannetgantes2006 7 років тому +2

      Arief Imran Roslan ahh same

    • @nzlkicks0343
      @nzlkicks0343 7 років тому

      Arief Imran Roslan exactly

    • @Ghostcupcake1
      @Ghostcupcake1 7 років тому +1

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

    • @dudson6401
      @dudson6401 6 років тому

      Arief Imran Roslan same

  • @atticuslewis6715
    @atticuslewis6715 8 років тому +87

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

  • @Ketrin8
    @Ketrin8 2 роки тому +2

    Sweat child, you were such a beautiful human being. Beautiful boy with blue eyes, so brave and positive thinking. You are the greatest inspiration, superhero, soldier and butterfly at the same time. My heart hurts so much and I am infinitely sad that the world has lost such a rare, good, wise, unbelievable boy. Rest in peace Angel. I CAN T STOP CRYING. IT S NOT FAIR. 😢😢😢
    I wish your mother and sister a lot of strength in this world to manage life with such a great loss. I wish them only the best. Watch out for them from heaven, dear Jonathan. I LOVE YOU. YOU RE THE MOST GREATEST FROM GREATESTS. ❤❤❤❤❤🙏🙏🙏🙏🙏

  • @ginamarshall7691
    @ginamarshall7691 5 років тому +1

    Sweet baby. I am so thankful you are free. No more pain. Sweet, sweet boy with such an amazing heart and soul.

  • @Garcia-elf
    @Garcia-elf 9 років тому +444

    but hey, they say god works in mysterious ways.

    • @calebwhite5859
      @calebwhite5859 9 років тому +43

      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
      @Garcia-elf 9 років тому +280

      haha guess the sarcasm was lost in translation

    • @donnamore8855
      @donnamore8855 9 років тому +1

      A. G-E Nope, not in the translation

    • @starcow17
      @starcow17 9 років тому +91

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

    • @starcow17
      @starcow17 9 років тому +8

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