Butterfly Child: Jonathan Pitre’s Inspiring Life that will Leave You in Tears

In a perfect world, all children get to live happy lives, free to explore and discover the world that awaits them; away from all the troubles and hardships that usually come with the territory of being an adult. 

But alas, we are not living in perfect world. Just like adults, many children, too, suffer - may it be from social injustices, poverty, or physical adversities. Some, especially the very young, may not be able to cope with such hardships, while others harness strength from their own weaknesses.

Jonathan Pitre is a 14-year old boy born with a rare and extremely painful genetic skin condition called Epidermolysis Bullosa (EB). People with EB are often described as “Butterfly Children” because their skin developed to be as fragile as a butterfly’s wings. Any friction to the skin can cause it to have blisters - even consuming food. The simplest tasks such as bathing can prove to be very difficult and time consuming as it takes Jonathan and his mom 3 hours to finish the whole grueling process. 

However, despite all of it Jonathan still finds so much strength and courage to face his condition head on. He says, “As much as the butterfly is pretty and gentle, we have the heart of warriors. We are very much stronger than what we appear.” When asked where he gets his strength from he said that it was from all the people surrounding and believing that he can go through with his condition. 

In 2012, he was invited to an EB conference in Toronto where he was able to see for the first time some of the children who also had his condition. Seeing that he wasn’t alone in the battle made a very significant impact on his life. Since that event, he knew that he wanted to become an ambassador for people like him, to help and fight the battle with them. 

Jonathan made a courageous effort to spread awareness of EB to the world by sharing his life and all the challenges that comes with his condition to the world. His touching story became viral and inspired so many especially the ones suffering physical adversities such as EB. 

Today, Jonathan is now the ambassador for DEBRA Canada, a non-profit organization and charity dedicated to provide support to families affected by EB and increasing its awareness.