Not a day goes by that 14-year-old Jonathan Pitre does n'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 wo n'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 ca n'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 ca n'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 ca n'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 . '
Epidermolysis Bullosa has deep blistering wounds all over his body that wo n't heal . His condition , Jonathan Pitre , has a life expectancy of 25 years . Every day screams in pain as his mother bathes and bandages him . He loved sports but ca n't play any more , now trying out sportscasting . For more about Jonathan and his condition , visit the website of charity Debra .