text: Not a day goes by that 14-year-old Jonathan Pitre doesn't scream in pain. Born with Epidermolysis Bullosa - or 'butterfly skin' - his body is covered with deep blistering wounds that will never heal. Holding cutlery to eat is incredibly difficult. Bathing is excruciating. Scroll down for video . Struggle: Born with Epidermolysis Bullosa, Jonathan is covered with deep blistering wounds that won't heal . Pain: He must be bathed and bandaged every day. His skin is as fragile as a butterfly's wing . Team work: Jonathan, 14, said he could not get through life without his mother Tina who carries and feeds him . 'You never know exactly what EB is unless you have it... just the feel of it, the pain that you live in every day,' the bandaged teenager remarks in an interview with the Ottawa Citizen. 'Even when I'm sleeping, when I'm dreaming, I still am sort of conscious because I feel that pain.' Unless a cure is found, Jonathan will likely only live to 25. But in a tone well beyond his years, Ottawa-based Jonathan says frankly: 'I just have to get on with it.' One in every 17,000 people suffer from the genetic condition. Healthy skin is made up of three layers, but Jonathan is missing the middle layer which holds the inner and outer layers together. Dreams: He had to stop playing sports so has turned his focus to sportscasting - and the experts are impressed with his maturity and knowledge. He is pictured here with a Vikings Junior ice hockey player . Difficulties: Both Tina and Jonathan say they try not to think about the fact that he has a life expectancy of 25 . Inspiring: He says he can even feel pain when he is asleep but is trying his best to 'live in the moment' Sufferers are dubbed the 'butterfly children' due to the fragility of their skin: as breakable as a butterfly wing. The condition has outlined Jonathan from many childhood activities. A sports fanatic, he played hockey and loved gym class until his condition meant he could not compete with the other children. Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters. Mason has the rarest form of EB where blistering occurs at the junction between the epidermis and the dermis. In most cases, the symptoms of EB are obvious from birth. It is caused by faulty genes inherited from one or both parents. There are many cases when both parents are carriers of the faulty gene without realising it. EB is rare. Just one in every 17,000 children has it. There are thought to be 5,000 people living with EB in the UK. There is no cure for EB so the treatment aims at preventing blisters becoming infected. Moving forward, he is channeling his fascination into other aspects of sports. He has appeared as a sportscaster on Canadian TV shows, and guest commentated football games for SportsNet. 'It's unfortunate but you've just got to go with the flow, there's nothing I can do about it,' he told the Ottawa Citizen. 'I just studied different options - if I can't do this I'll think of other options. So that's why I came into sportscasting and scouting and coaching, that's where it all started. 'I can't play sports but there's much more to sports than players.' Professionals are astounded, remarking on his knowledge, his confidence and his maturity. Jonathan credits these attributes to his condition: 'Because I can't play sports, I stay with the adults. So I guess I had to kind of grow up faster.' He admits there is a 'nagging' feeling at the back of his mind every day that 'I only have 10 years left.' But for now, he's trying to 'live in the moment.' 'Great things do not come easily,' he told an audience at National We Day last week. 'But they do come when you try with your full heart, when you're willing and open to embrace life, when you take things one day at a time and use what you've got.' His mother, Tina, said it is a struggle every day as she bathes him, knowing he is in pain. However, she cherishes the silver lining: 'I see him every day waking up with a smile.'
target: Jonathan Pitre has deep blistering wounds all over his body that won't heal .
  His condition, Epidermolysis Bullosa, has a life expectancy of 25 years .
  Every day screams in pain as his mother bathes and bandages him .
  He loved sports but can't play any more, now trying out sportscasting .
  For more about Jonathan and his condition, visit the website of charity Debra .