The Butterfly Child | TSN Original

strength character courage these are the qualities we worship in our sports heroes 14-year old Jonathan pizza from Russell Ontario desperately wanted to be one of those athletes sports are his passion he dreams of them but he never had the chance Jonathan was born with a rare skin condition known to be the worst condition you've never heard of and as you will see his strength character and courage are beyond anything we see in sports his story contains imagery that is tough to watch but both Jonathan and TSN felt it was important to show this is the story of the butterfly child when you dream what do you dream I'm playing sports Haleh I would not sell and Nina won't fit person in the world do you dream about having one day that's pain free I dreamed of it even when I'm sleeping I still feel that pain the pain is like somewhere inside my head and I can always know it's there it's always pushing it to my limits it's always pushing past my limits people with your condition they call them butterfly children why do they say that the colors work for children because our skin is as fragile as a butterfly's wings as much as a butterfly is pretty yet gentle we had to hurt warriors we are very much stronger than we appear Jonathon Petra was born with epidermolysis bullosa or EB for short it is one of the most rare and painful genetic conditions known to modern medicine if you imagine the skin layers as being bricks but wall the bricks are held together by mortar or glue patients that are affected with this condition have a defect in the way they make proteins that make up the mortar or the glue as a result the wall is very shaky so in other words the skin is extremely fragile to minimal trauma any friction causes blisters on Jonathan's body eating causes blisters inside his throat it's an existence 14 year old Jonathan has known his entire life our little pleasures of life he doesn't have that he can't join into the gym he can't play any sports has he always loved sports he has he's just getting more and more addicted to them he says it's in his DNA there was always something about hockey that intrigued me and we're just a physical aspect of the game the Senators are your favorite local team you gotta vote for them what position did you see yourself claim Saturn I've always been not the scorned thought like Ovechkin learned more of a cross B type I you know I see the ice wall when he was younger Jonathan tried playing ball hockey and in recent years has attempted sledge hockey he's moving hey good job but but the recovery from each sport became too much to handle did it drive you crazy that you couldn't play well it kept me awake at night geez like for the longest time I dreamed of it some mornings I woke up and I was playing the game and scoring and stuffing when I woke up I was like okay can I go back to sleep like skip school today to help manage his condition and prevent infection Jonathan and Tina must go through the most excruciating process of Jonathan's day his bath once he's fully soaked the two carefully remove all the bandages from Jonathan's body it's an incredibly delicate process it's always that battle between pain and not what nothing I just want you to keep taking your dressing huh is there a more skin on your hand yeah yeah I saw it Johnny you didn't have to show me I know I saw that too well done um it really hurts for her obviously the bath is just the first part of the process the second part involves putting a new set of dressings on his body in total the bath and dressing can take over three hours and Jonathan and Tina must do it every other day probably the biggest challenge being so helpless in front of your kid and having to do dressings and I mean you're the one who's hurting him I've had Jonathan begging me to stop and I can't this is not an easy process it's one thing to hear about it but it's nothing to see it it's a lot different than what you think you just see how you know we work as a team to do what has to be done really Dada we are fini whoo henkle good there you go I'm done where do you get the strength to get up every morning knowing what you're gonna have to go through that strength comes from the people around me because they do believe in me I can get through it for years Jonathan believed he was the only one going through the pain until 2012 when he was invited to an EB conference in Toronto it was a conference that changed his life I had never met anyone with my condition I had never you know had any explanation I had never known there was anyone else how did you feel when you saw the other kids that had it I knew that it wasn't alone anymore I knew since then that I was gonna become you know an ambassador I want to start helping other people with eating in October of 2014 Jonathan put his story out to the world with the help of the Ottawa Citizen Jonathan courageously revealed his wounds to the masses the article went viral throughout Ottawa and landed on a special teams doorstep I read it and it was so moving that I brought the article in and we talked about what we could do to help it any way we could November 20th 2014 the Ottawa Senators invite Jonathan to a game and make him a scout for the day he signs a pro contract from GM Brian Murray and takes questions from the media is there any one particular area of the Senators are going to be focusing in on tonight or is it the whole team that you're going to watch the team isn't just made of one player it's also I'll be watching the whole team the young the organization I had the privilege of you know sitting down with him for the whole game do we want not shooting a puck exactly good cuff no that's uh good he was just like anyone else he was one of our scouts he was he was Jonathan the guy that I talked hockey with and then you know he was out for the game he was Jonathan like Miniver Scouts who talked to players congratulations Your Honor no as a scout yeah it's a good feature words only he's got that personality he's got that life to him that not a lot of kids have I was wanting to know if he really didn't want to play here like if we're playing here you know because in watching a hockey game if I want to be here yeah I want to be here I like it here after five years when we think okay stay yeah just talking to mr. smart kid because he's a little bit different and he has a disease and you can't touch him it doesn't mean that he's any different from anybody else he's a great kid I have a lot of respect for a young man like him since his day with the Senators jonathan has helped raise over $100,000 for EB awareness there is no cure for epidermolysis bullosa most butterfly children don't make it to the age of 30 it's a reality 14 year old Jonathan deals with head-on have you thought a lot about the future definitely in a school thing and yes I I thought about it for sure like how can't you he know it's a reality but I think I just pushed outside you know I'm here and I'm gonna go step by step day by day and you never know what the future holds I'm gonna live to 100 we can't no but I'm not gonna stop anytime soon I'm gonna keep going

Channel: TSN

Views: 12,238,356

Keywords: The Sports Network (TV Network), NHL, Ottawa Senators (Professional Sports Team), Jonathan Pitre, Butterfly Child, EB, Epidermolysis Bullosa (Disease Or Medical Condition), TSN Original, James Duthie, Inspiration

Id: iuYxGtuBSgk

Length: 12min 44sec (764 seconds)

Published: Tue Apr 14 2015