With everything against him and despite all of the odds, Jonathan Pitre refuses to be discouraged or to be stopped from spreading knowledge about his rare and fatal disease Epidermolysis Bullosa, otherwise known as just EB.

Epidermolysis Bullosa is a very rare disease where only twenty out of one million newborns in America are born with and it’s usually an inherited trait. There is also no known cure for this disorder which makes John’s case an even more special one because in most situations the life expectancy is very short, most of the patients only live up to the esteemed age of 30 years and unfortunately have very sad painful lives.

There are many downsides to having Epidermolysis Bullosa because this condition causes the skin to have very bad blisters and can even make the skin fall off. After some time many of these blisters become chronic wounds and unfortunately they never heal 100% or just fall off. However these blisters aren’t only limited to the surface skin they have been known to spread to the mouth, throat and parts of the esophagus but the main cause of death when you have this disease is just simply the deterioration of the body.

Jonathan is just like any other 14 year old boy from Canada, except he that he has EB that plays a major part of his everyday life. This doesn’t stop him from living life to the fullest he says ‘’that just cause i might not be able to play sports or have a big social life like the others kids but what i can do is to share knowledge about my condition and spread awareness to help others like me. Jonathan’s thoughts and words has inspired many people in and out of his life.

Jonathan’s mom says that her son has many difficulties in his everyday from getting ready in the morning to taking a shower at the end of jonathan’s day but she says that this doesn’t discourage him. ‘’My son has always been a very happy kid despite all the pain he goes through everyday i would never be able to do what he does, he have taught me to value life more,” she says.