The Life of ‘Butterfly Boy’

A positive attitude is not something that you would expect from someone whose body is covered in blisters and whose skin falls off at the slightest touch.

Fourteen-year old Jonathan Pitre spends his teenage life much differently from other young people his age. Like most boys, Jonathan loves sports and even dreams of becoming a coach, but his chances of fulfilling his dream is very slim. While others head out to the field after school, Jonathan has to come home and deal with a life-threatening condition that he has been suffering from since he was a baby.

Epidermolysis bullosa

Epidermolysis bullosa (EB) is a rare disease in which the skin is covered in blisters and shears off an extremely painful condition that Jonathan has been dealing with all his life. People with EB have a shorter life span and are expected to live only until they are 25 years old.

Jonathan has been vocal about how grateful he is about having his mum who, he said, has given him support when he needs it.

The bath, which he has to take every other day, is very far from the relaxing bath that we all know.

He has to soak in bath salt, which causes inconceivable pain. He then has to be bandaged from the feet up to make sure that he is protected from infection. The entire process takes more or less four hours to complete, an activity that both Jonathan and his mother Tin has been doing for 14 years now.

Knowing how much little time he has, Jonathan does not like thinking of EB as something that can just defeat him. Despite his debilitating situation, he goes out of his way to raise awareness about EB and has served as an inspiration to those who have the same condition.

So far, the EB Charity of DEBRA Canada has received $32,000 and the fund will be used to fulfil a dream of each EB patient.

The charity money means so much to Jonathan because it means he will finally see the Northern Lights with his family. He believes that all people with EB who have passed on move up to the sky and being able to see the Northern Lights will bring him closer to them.

EB is a rare disease that has an estimate of 500,000 patients all over the world.

Find out more about Jonathan, ‘The Butterfly Boy’, here..