Тёмный

The Butterfly Child | TSN Original 

TSN
Подписаться 698 тыс.
Просмотров 12 млн
50% 1

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.

Спорт

Опубликовано:

 

12 апр 2015

Поделиться:

Ссылка:

Скачать:

Готовим ссылку...

Добавить в:

Мой плейлист
Посмотреть позже
Комментарии : 4,9 тыс.   
@acornstairlift
@acornstairlift 9 лет назад
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 лет назад
Anything that doesn't imply being frail.
@Cavouku
@Cavouku 9 лет назад
acornstairlift I kinda like it, actually. Makes me think of Cinderella Man, in that ironic-but-true way.
@acornstairlift
@acornstairlift 9 лет назад
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 лет назад
When it comes to strength this kid could beat out a SEAL
@motnurky7055
@motnurky7055 9 лет назад
acornstairlift Tiger Child.
@kronosrocks2591
@kronosrocks2591 9 лет назад
That kid, is stronger than all of us put together.
@dfootball2384
@dfootball2384 8 лет назад
He is
@michaelmcnally8963
@michaelmcnally8963 8 лет назад
+KronosRocks My gf lives with this condition also. They are STRONG.
@michaelmcnally8963
@michaelmcnally8963 8 лет назад
+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 лет назад
+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 лет назад
Igor S. Agree 3000%
@NarrativeFrontier
@NarrativeFrontier 5 лет назад
“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
@briansefring4981 2 года назад
Amen.
@jalas3dk473
@jalas3dk473 Год назад
Amen.
@splinterbyrd
@splinterbyrd 4 месяца назад
And his mother deserves a medal as well❤
@DanielRomero
@DanielRomero 6 лет назад
I have no words to say aside from... shit. I am thankful for my life. Rest peacefully, Jonathan.
@gautamkc
@gautamkc 5 лет назад
Thank god its not me! Right?
@whyumadbro2163
@whyumadbro2163 5 лет назад
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 лет назад
Majestic Mattie bs
@johnpotatogaminggr900
@johnpotatogaminggr900 4 года назад
@@trisalty1172 Wdym bs he might be telling the truth I have EB too
@trisalty1172
@trisalty1172 4 года назад
JohnPotatoGaming gr yeah now that you responded I realized how stupid that was to say
@HowardPinsky
@HowardPinsky 9 лет назад
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 лет назад
Et comme tu n'y peux pas, c'est mieux de devenir un adaptivore
@nathanneufeld9724
@nathanneufeld9724 9 лет назад
your a hero brother man god bless
@MuhanadYOUNIS
@MuhanadYOUNIS 9 лет назад
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 лет назад
Agree
@aliciadeighton8798
@aliciadeighton8798 9 лет назад
Rick Gray totally agree
@RissShot
@RissShot 6 лет назад
RIP Jonathan, hope you’re playing hockey in heaven
@gettindirty
@gettindirty 4 года назад
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 года назад
Wait he died?
@makernewb
@makernewb 4 года назад
😭DIP Jonathan I pray for him in heaven 🙏
@sjcrowley19
@sjcrowley19 4 года назад
He died?
@sjcrowley19
@sjcrowley19 4 года назад
Hope he’s the Wayne Gretzky of heaven
@DHS9
@DHS9 6 лет назад
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 лет назад
Didnt get the live yet...
@airgregone
@airgregone 5 лет назад
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 лет назад
If only God prevented him from having this disease.
@dimitriousslovenski8883
@dimitriousslovenski8883 5 лет назад
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 лет назад
Dimitrious Slovenski god puts everyone on this planet for a reason maybe Jonathan’s reason was to tell people his story
@kelesa3968
@kelesa3968 6 лет назад
rest in peace jonathan ❤️
@cantrustme6295
@cantrustme6295 6 лет назад
Kelesa I Def just saw that and came here I actually had this in my saved videos from a while ago
@stabbedtosleep
@stabbedtosleep 6 лет назад
omfg he died????
@ScottHedley
@ScottHedley 6 лет назад
Ya yesterday :(
@tmoney9539
@tmoney9539 6 лет назад
Scott Hedley So sad.....😞
@Lalvon_Zelpharr
@Lalvon_Zelpharr 6 лет назад
He died of respiratory failure, it's a goddamn shame well at least he's not suffering any more:(
@skatensanta
@skatensanta 9 лет назад
Oh my god I am in tears.
@topkev
@topkev 9 лет назад
Squiggles McJiggles is that tears Ontario, or tears california?
@bikerox
@bikerox 9 лет назад
Squiggles McJiggles so much
@loserman123able
@loserman123able 9 лет назад
MiracleFruitClock and then there's this guy ^
@mther9187
@mther9187 9 лет назад
MiracleFruitClock Sorry dude, some of us have souls.
@ubs16
@ubs16 9 лет назад
Same... Poor kid man.. God I wish there was a cure for this
@laswap1
@laswap1 9 лет назад
And there I am unhappy with my life because I'm overweight and single....
@GloriousXoyas
@GloriousXoyas 9 лет назад
Rowan Williams Go work out then.
@hollowearthreality
@hollowearthreality 9 лет назад
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 лет назад
Rowan Williams sure makes all of your life problems seem microscopic.
@90kiperberg
@90kiperberg 9 лет назад
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 лет назад
Rowan Williams Its all good Rowan Williams i got your back brother
@sakshigawande733
@sakshigawande733 6 лет назад
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 лет назад
Thank you for the explanation.
@kirbyolsen5941
@kirbyolsen5941 4 года назад
Sakshi Gawande second degree*
@yoda5280
@yoda5280 4 года назад
Lil Nigga third degree*
@natalina8593
@natalina8593 4 года назад
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 года назад
Man you must be a doctor or something
@parkypro9490
@parkypro9490 4 года назад
This kid was an absolute beast, RIP JONATHAN😭
@splinterbyrd
@splinterbyrd 4 месяца назад
And I suppose it was impossible for anyone to even cuddle him😢
@juanlee337
@juanlee337 9 лет назад
when you fee like complaining about your shitty day, watch this. i will never complain about anything ever again.
@bobbobby1892
@bobbobby1892 9 лет назад
juan lee keep complaining. Keep wishing for a better tomorrow. Keep telling the world that you are going to change it.
@CakeBossan
@CakeBossan 9 лет назад
juan lee thats like saying "you cant be happy, people in xyz are happier than you are"
@GoldenSodaXbox
@GoldenSodaXbox 9 лет назад
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 лет назад
***** 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 лет назад
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?
@johnyboy268
@johnyboy268 9 лет назад
I think im just gonna stare out the window for the next hour or so
@tommaniacal
@tommaniacal 9 лет назад
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
@ONOBITCH 9 лет назад
+Tommaniacal I think I recall PBG saying something like that in his Darkseed review..
@tommaniacal
@tommaniacal 9 лет назад
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 лет назад
Tommaniacal Mike Dawson. Master of ring toss.
@NoiseKidd
@NoiseKidd 9 лет назад
Tommaniacal please be sarcastic
@Kari2025
@Kari2025 6 лет назад
Very sad to hear about his passing. He was so intelligent and soft spoken during this interview.
@tommyscully9970
@tommyscully9970 5 лет назад
I cant imagine the torture that kid went through every day of his life it’s truly heartbreaking.
@BruceLeefromthegrave
@BruceLeefromthegrave 9 лет назад
I guess this means I don't have anything to complain about my life.
@dyingsun23
@dyingsun23 9 лет назад
Don't want Shadenfraude makes me ashamed of myself for complaining about the 'flu :/ Puts things in perspective a bit.
@HalcyonVoid
@HalcyonVoid 9 лет назад
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 лет назад
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 лет назад
***** You're the ass. I'm against people who want to feel superior,.
@BruceLeefromthegrave
@BruceLeefromthegrave 9 лет назад
***** What was the purpose of "it's part of being complaining" in your comment?
@UntitledKirk
@UntitledKirk 9 лет назад
He seems like a really smart kid for his age.
@PepsiSSB
@PepsiSSB 9 лет назад
UntitledKirk When we go through pain we learn fast. I think that says something about him.
@TheChallengers6669
@TheChallengers6669 9 лет назад
UntitledKirk is he 15?
@perrinii
@perrinii 9 лет назад
The Challengers He's 14 i think
@MisterEric
@MisterEric 9 лет назад
UntitledKirk He speaks better than me.. haha
@HeyitsTom999
@HeyitsTom999 9 лет назад
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.
@kimnamjoonkimseokjinjinmon9255
@kimnamjoonkimseokjinjinmon9255 4 года назад
RIP Jonathan Pitre 2000-2019
@Tarasbasement
@Tarasbasement 4 года назад
2018* not 2019
@tschindel9650
@tschindel9650 6 лет назад
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 лет назад
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
@lwh6 9 лет назад
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
@sevencoleman1046
@sevencoleman1046 9 лет назад
No one should have to go through that pain
@supraguy4694
@supraguy4694 9 лет назад
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 лет назад
***** 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 лет назад
***** They probably cannot detect skin problems in the womb, and even if they could, it would be too late for abortion.
@sovereign4045
@sovereign4045 9 лет назад
***** 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 лет назад
Ever heard of cluster headaches those are way worse
@laneymcnamara3266
@laneymcnamara3266 6 лет назад
I hope in another life you can be the athlete you were destined to be. Rest in peace Johnny 😞❤️
@aubreyaragon988
@aubreyaragon988 4 года назад
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.
@Kimbumbala
@Kimbumbala 9 лет назад
Jesus Christ. I'm supposed to be studying for finals and now I'm crying in the fucking library.
@copacetic9018
@copacetic9018 9 лет назад
Kimbumbala Get off youtube and get back to work!
@RonPaulRevolution500
@RonPaulRevolution500 9 лет назад
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
@CynicalAlco
@CynicalAlco 9 лет назад
Who the fuck is chopping onions in here?
@kx4445
@kx4445 9 лет назад
Same here
@darreanturner1209
@darreanturner1209 9 лет назад
lmfao its ok bro your not alone
@0301jazz
@0301jazz 9 лет назад
***** 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 лет назад
IKR? I was crying the whole time :-O
@Batman-cw5cr
@Batman-cw5cr 9 лет назад
*****Do You See That Black Spot on Your Chest Thats Were Your hearts Supposed To be At BITCH
@DannyL87
@DannyL87 6 лет назад
Well I wasn't expecting to cry today ...
@amberhall1288
@amberhall1288 6 лет назад
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
@shotdunyun835 6 лет назад
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...
@innnernetz
@innnernetz 7 лет назад
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.
@cheeriototoro8063
@cheeriototoro8063 7 лет назад
Bless him :'( holding his little Charizard toy for comfort :(
@aliceinchainslover
@aliceinchainslover 7 лет назад
Cheerio Totoro 😭😭
@paullemieux1346
@paullemieux1346 4 года назад
That makes me cry every time I see it
@iRedtracx
@iRedtracx 3 года назад
I don't understand much but I cry :(
@KQuinn672
@KQuinn672 3 года назад
So sorry u suffered be at peace!
@Nrod1332
@Nrod1332 3 года назад
WE CAN SEE IT WITH OUR OWN EYES STOP PUTTING THESE DUMB ASS COMMENTS KID
@amateursportscards7317
@amateursportscards7317 Год назад
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
@amberhall1288
@amberhall1288 6 лет назад
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
@thecreedslair 3 года назад
Yeah I think I know what your saying, He is 14 but he sounds 6.
@aueier
@aueier 2 года назад
@@thecreedslair …???
@thecreedslair
@thecreedslair 2 года назад
@@aueier You think he sounds 14?
@aueier
@aueier 2 года назад
@@thecreedslair it’s just disrespectful of u to say that.
@thecreedslair
@thecreedslair 2 года назад
@@aueier Sounds like a you problem
@harrymoore1908
@harrymoore1908 7 лет назад
I wish all of us could just take a little bit of the pain, so he could be better
@Redrush11
@Redrush11 3 года назад
My thoughts exactly
@briansefring4981
@briansefring4981 2 года назад
amen.
@greathoonta3461
@greathoonta3461 2 года назад
Not just him. All people with this disease.
@bu467
@bu467 9 лет назад
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 лет назад
Bryce Unrau was it similar to this one?
@konata2893
@konata2893 9 лет назад
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 лет назад
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 лет назад
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 лет назад
Rest in peace you absolute legend :(
@juanelcuh3209
@juanelcuh3209 5 лет назад
5:49 when his eyes rolled from pain I cried
@Nrod1332
@Nrod1332 3 года назад
We can see the video with our own eyes no need to ruin it for the rest, idiot
@PEAHATER3
@PEAHATER3 9 лет назад
this boys soul made me cry
@PEAHATER3
@PEAHATER3 9 лет назад
fierce syd in a good way
@gavinsingh3996
@gavinsingh3996 8 лет назад
+fierce syd 😢
@jaydensprivatechannel4082
@jaydensprivatechannel4082 6 лет назад
100TH LIKER. Also please don't cry.
@amberhall1288
@amberhall1288 6 лет назад
fierce syd Yes... exactly. His soul...
@louisa7042
@louisa7042 9 лет назад
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 лет назад
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 лет назад
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 лет назад
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 лет назад
***** 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 лет назад
*****
@user-fu5cd8bp1v
@user-fu5cd8bp1v 6 лет назад
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.
@KwniStewart
@KwniStewart 6 лет назад
He's such a sweetheart. So adorable
@Brennie4HOCKEY
@Brennie4HOCKEY 9 лет назад
The fuck is this strange liquid running from my eyes?
@SomeGuy_Somewhere
@SomeGuy_Somewhere 9 лет назад
Brennie4HOCKEY blood get a doctor, or a priests... It might be a demon
@aiden3373
@aiden3373 9 лет назад
Brennie4HOCKEY To the gallows!
@malvinbaez1209
@malvinbaez1209 9 лет назад
Brennie4HOCKEY These nuts.....HAHAHAHAHA got eemmm got emmm
@69PoloW69
@69PoloW69 9 лет назад
***** aren't u funny, batty boy :)
@SomeGuy_Somewhere
@SomeGuy_Somewhere 9 лет назад
***** batman
@nesta4969
@nesta4969 9 лет назад
This kid is literally my hero..
@THEGAMER-fo4ne
@THEGAMER-fo4ne 6 лет назад
Nesta how
@firewalkerg11
@firewalkerg11 6 лет назад
what a courageous boy. I cannot stop crying. May his soul rest in peace now. Love & blessings to his amazing and brave Mom.
@ivonotei
@ivonotei 6 лет назад
Johnathan is such an inspiring, extraordinary child. We really should be thankful if we are healthy
@Camateur
@Camateur 9 лет назад
Thanks TSN.. hit me right in the feels.
@lord_loopii6821
@lord_loopii6821 9 лет назад
please, that's an uppercut to the feels
@mcPeekBetweentheReeds
@mcPeekBetweentheReeds 9 лет назад
Yes,
@Jacktionman101
@Jacktionman101 9 лет назад
***** Oh wow, Fairy Tail reference xD
@alexmcgraw6266
@alexmcgraw6266 9 лет назад
theCamateur May Allah help him , its a test on this earth, he is gonna go to the heaven for sure.
@suomynona
@suomynona 9 лет назад
theCamateur I seen this going back ............. not fair i see it twice and its all new here
@gonzalesrafael22
@gonzalesrafael22 9 лет назад
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 лет назад
You can always donate to organizations that's researching this particular disease or help raise awareness :)
@seyitcansenpinar233
@seyitcansenpinar233 9 лет назад
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 Год назад
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.
@petertaivassalo4489
@petertaivassalo4489 6 лет назад
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!
@dantecaruso6910
@dantecaruso6910 8 лет назад
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.
@Nick-uv5nl
@Nick-uv5nl 9 лет назад
This kid is so fucking cool.
@jessejammin5888
@jessejammin5888 9 лет назад
Nick F This guy is absolutely amazing.
@nford2083
@nford2083 9 лет назад
Jesse Jammin I agree
@sssssfGify
@sssssfGify 9 лет назад
Nick F Kid is a fucking champion. What a awesome awesome kid.
@4thgod
@4thgod 6 лет назад
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.
@DevinedParadise
@DevinedParadise 6 лет назад
he was way too precious for this earth. rip precious angel
@Investirane.BG1
@Investirane.BG1 9 лет назад
I hope they find a cure soon
@Heibe
@Heibe 9 лет назад
Mark B It's a chronic condition, it can be treated to make life easier but not cured.
@sinephase
@sinephase 9 лет назад
Heibe Not true, if they're able to get genetic therapies working.
@daydrindaey3352
@daydrindaey3352 9 лет назад
:)
@conormcmaygregor5708
@conormcmaygregor5708 9 лет назад
Heibe Remember that flying was once only for birds, and that space held only the stars. Never lose hope man.
@christianlapasen9210
@christianlapasen9210 9 лет назад
Mark B there is a cure. doctors know the problem, they will find the solution.
@e.bassett3922
@e.bassett3922 7 лет назад
This kid is inspirational. I'm in fucking tears. I am never going to complain about ANYTHING trivial ever again.
@TheGoodDoctorSRB
@TheGoodDoctorSRB 6 лет назад
A year has passed, how has it been? :)
@Anonymous-gh6il
@Anonymous-gh6il Год назад
That kid is a hero,plus he gets bonus points for being a sens fan Rest in Peace bro
@yeetuspeetus6598
@yeetuspeetus6598 3 года назад
RIP bud, enjoy the ice rink in the sky 🕊
@JJ_EETFUK
@JJ_EETFUK 8 лет назад
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
@capybaralvr
@capybaralvr 8 лет назад
watching his eyes roll back as hes taking off the bandages was heart breaking
@TheExecutoriscoolerthanyou
@TheExecutoriscoolerthanyou 6 лет назад
bralyn more like heart warming
@michaelaradke1987
@michaelaradke1987 6 лет назад
The Executor what's wrong with you?
@TheExecutoriscoolerthanyou
@TheExecutoriscoolerthanyou 6 лет назад
Michaela Radke I don't think anything is.
@michaelaradke1987
@michaelaradke1987 6 лет назад
The Executor then why'd you say his pain was heart warming?
@TheExecutoriscoolerthanyou
@TheExecutoriscoolerthanyou 6 лет назад
Michaela Radke because it was heart warming. It was hilarious.
@Roof_Pizza
@Roof_Pizza 6 лет назад
We miss you Jonathan. May your pain finally be put to rest.
@Aravestia
@Aravestia 6 лет назад
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
@ftme387
@ftme387 9 лет назад
I felt so sad when he was just holding his charmander plushy
@edwardm8453
@edwardm8453 8 лет назад
It was a Charizard just letting u know
@dfootball2384
@dfootball2384 8 лет назад
+Edward M really come on
@edwardm8453
@edwardm8453 8 лет назад
Dfootball xD I couldn't resist the auto-correct side of me took over
@BvckGames
@BvckGames 7 лет назад
Ft Me oh nooooooo
@letttylu
@letttylu 7 лет назад
:"( so sad ... he is just a kid !
@rihannasbitchx3
@rihannasbitchx3 9 лет назад
Now this is ACTUAL COURAGE
@nerfdude6312
@nerfdude6312 3 года назад
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 года назад
Probably people who are dislike the fact that they recorded him
@nfa549
@nfa549 3 года назад
they were crying and couldn’t see the like button
@liamhaines4573
@liamhaines4573 3 года назад
Go away fortnite kid
@FleukYT
@FleukYT 3 года назад
@@liamhaines4573 bro wtf did he do?
@ryankoehler8038
@ryankoehler8038 Год назад
This is what real strength looks like. Dude is a fuggin Beast of Human!
@Chiqsan
@Chiqsan 9 лет назад
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 лет назад
it's normal to be mad at a pimple if your skin is average
@rebeccadruery8843
@rebeccadruery8843 6 лет назад
CHiiQ I just got new this boy died
@elysiumaster486
@elysiumaster486 6 лет назад
CHiiQ this boy died
@laila-dr1uu
@laila-dr1uu 5 лет назад
My Chemical Unicorn other people have it too.
@kamilahgriggs515
@kamilahgriggs515 8 лет назад
My heart breaks for him and his mother. He is sentenced to a life of pain and so is she.
@kayleenjurski1954
@kayleenjurski1954 6 лет назад
Rest In Peace, sweet boy ❤️
@GinaZalner
@GinaZalner 4 года назад
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 😢😔
@shadezentertainment9877
@shadezentertainment9877 8 лет назад
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 лет назад
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 лет назад
me to dude! i was so sad....
@aidantait9107
@aidantait9107 8 лет назад
+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.
@alansmithee4150
@alansmithee4150 8 лет назад
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 лет назад
Ikr
@THEGAMER-fo4ne
@THEGAMER-fo4ne 6 лет назад
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 лет назад
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
@elysiumaster486 6 лет назад
THE GAMER 27 he died
@playaplaya162
@playaplaya162 5 лет назад
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
@r2micro373
@r2micro373 6 лет назад
he was so sweet. rip.
@ana610
@ana610 8 лет назад
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
@10tumms
@10tumms 8 лет назад
As an Ottawa fan and a young hockey player every game I win will be for this kid
@ruidadgmailcanada8508
@ruidadgmailcanada8508 Год назад
Tina, your Jonathan is still touching lives. Thank you for sharing your son with the world. ❤
@yotday
@yotday 6 лет назад
What a beautiful human. Thank you for your inspiration, Jonathan.
@TheMadThresher
@TheMadThresher 9 лет назад
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 9 лет назад
TheMadThresher Pain*
@FlyingOverTr0ut
@FlyingOverTr0ut 9 лет назад
What a great kid.
@kittychan3992
@kittychan3992 6 лет назад
Rest In Peace johnathan ❤️ you will be in our hearts and will forever be missed ilysm 💕
@maxwell_5oh
@maxwell_5oh 6 лет назад
No words can describe the toughness of this man... stay strong buddy.
@SamBassComedy
@SamBassComedy 9 лет назад
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 лет назад
Samuel J. Bass He's only 14 years old. There's no saying what the future holds.
@DaytonaRoadster
@DaytonaRoadster 9 лет назад
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 лет назад
Samuel J. Bass "We're working on it" ~ Science
@SamBassComedy
@SamBassComedy 9 лет назад
Frommerman Thanks Science!
@frazerbldes
@frazerbldes 9 лет назад
Dr.Micheal Ambrose Weird and inappropriate statement.
@ParkBomsKing
@ParkBomsKing 8 лет назад
He is very brave. May the God bless him.
@LeviAckerman-ln8kt
@LeviAckerman-ln8kt 7 лет назад
You mean the god who also punished him with that disease?
@countercapp635
@countercapp635 7 лет назад
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 лет назад
VidalSlayiin I can disagree but have a nice day sir. I don't want to ruin it
@Bloodsoldr
@Bloodsoldr 6 лет назад
Yeah, he wanted him to get stronger alright. Now the kid's dead.
@mondoman5617
@mondoman5617 6 лет назад
You'd figure your imaginary god would bless him by not torturing him in the first place.
@_Inesitaa_
@_Inesitaa_ 4 года назад
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. ❤
@jgm9807
@jgm9807 3 года назад
I cry everytime i see this cause he suffered and it breaks my heart seeing kids and people suffering Rip Johnathan 😭😭😭
@IzludeTingel
@IzludeTingel 9 лет назад
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
@Squalla1 9 лет назад
+Izlude Tingel Any sources for that?
@Squalla1
@Squalla1 9 лет назад
+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
@8bitZach 8 лет назад
+Izlude Tingel true, but it's probably different for a genetic diesease :(
@maddiefreire1740
@maddiefreire1740 8 лет назад
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
@THEGAMER-fo4ne 6 лет назад
Maddie Freire he's not beautiful
@kristenk6898
@kristenk6898 6 лет назад
Maddie Freire
@Gamerswag-pl4yy
@Gamerswag-pl4yy 6 лет назад
THE GAMER 27 GO TO HELL BECAUSE U SAID THAT
@kyssedbyfyre915
@kyssedbyfyre915 3 года назад
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.
@rhon715
@rhon715 8 лет назад
What an amzingly strong and wise young man. We all cal learn alot from him. God bless him.
@soultulip2615
@soultulip2615 8 лет назад
U got this have god bless u and your family for this
@Benjamin-om3ih
@Benjamin-om3ih 9 лет назад
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
@geezcarter
@geezcarter 3 года назад
Jonathan was wise beyond his years. What a beautiful boy. Hope you’re playing hockey somewhere right now!
@sunniebear1842
@sunniebear1842 6 лет назад
The strength and wisdom within him shines so brightly. He is well and truly unstoppable.
@craigcurlee6428
@craigcurlee6428 8 лет назад
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 лет назад
+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 лет назад
Tyson Smith Bullshiet. You watch to many movies dude.
@THEGAMER-fo4ne
@THEGAMER-fo4ne 6 лет назад
Dexyu if you saying it's game then I agree with you 100%
@thezombienightmares3175
@thezombienightmares3175 9 лет назад
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 лет назад
***** Every video seems to lead to a discussion on religion :/
@20RandumGurlyGurl08
@20RandumGurlyGurl08 9 лет назад
***** 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 лет назад
thank u
@LeeahQueen
@LeeahQueen 4 года назад
I just remembered me watching this as a young child and I just learned you’ve passed away rest well in peace 🤕🤕
@ginamarshall7691
@ginamarshall7691 5 лет назад
Sweet baby. I am so thankful you are free. No more pain. Sweet, sweet boy with such an amazing heart and soul.
@atticuslewis6715
@atticuslewis6715 8 лет назад
my best friend had the same condition he does she passed away a few years ago at the age of 27
@riya4714
@riya4714 6 лет назад
Atticus Lewis I’m so sorry ❤️
@reeceboyle1905
@reeceboyle1905 6 лет назад
R I P anyone dying before 50 is really tragic but at least she had a friend
@RosieMeganChelle_official
@RosieMeganChelle_official 5 лет назад
Rest in peace
@cryptgamer1113
@cryptgamer1113 5 лет назад
Rip
@danieldilawri2711
@danieldilawri2711 3 года назад
Atticus Lewis 🙏🏼🙏🏼🙏🏼
@iistormyx7147
@iistormyx7147 9 лет назад
That is the bravest kid i ever seen and for every one thank god for what he gave you from health
@donnahicks9661
@donnahicks9661 11 месяцев назад
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
@dougb4835
@dougb4835 6 лет назад
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.
@frankmuller5071
@frankmuller5071 9 лет назад
This kid is a freaking champ. He has lots of courage and especially strength. Things I would like to have. I know he'll stay strong.
Далее
Jonathan Pitre dies, leaves a lasting legacy
6:24
Просмотров 731 тыс.
Two Kids. Two Undiagnosed Disabilities.
29:59
Просмотров 2,4 млн
Doctor Reacts To Rarest Diseases Ep. 2
14:37
Просмотров 2,4 млн
Beatbox brilliance | Tom Thum | TEDxSydney
11:39
Просмотров 79 млн
The Teenager With Butterfly Skin | BORN DIFFERENT
8:04
The Boy Whose Skin Grows Too Fast
4:43
Просмотров 15 млн
Rowan's Story
5:15
Просмотров 758 тыс.
Учу Стефа крутить 🏀
0:33
Просмотров 1 млн
Big Difference 🥶
0:42
Просмотров 7 млн
Big Difference 🥶
0:42
Просмотров 7 млн