Trending | News

‘Butterfly Child’ Fought to Raise Awareness About Condition. His Family Just Made a Devastating Announcement

Canadian teen Jonathan Pitre battled health problems his entire life due to a rare skin condition that earned him the name “butterfly child.”

Pitre had an incurable skin condition called epidermolysis bullosa (EB), which is known as one of the most painful skin conditions in the world, The Daily Mail reports.

Skin is usually made up of three layers, but those suffering from EB do not have the middle layer that's crucial for holding skin together.

That means their skin blisters and tears very easily at the slightest touch, just like a butterfly wing, according to the U.S. National Library of Medicine.

The condition made Pitre's life extremely difficult. And this week, his family announced that it claimed his life at age 17.

Jonathan Pitre/Facebook

Tina Boileau, his mother, wrote a tribute to her son on Facebook:

Jonny’s story has been made very public over the last few years as he invited you into his life and his daily struggles with EB as he tirelessly fought to raise awareness for this horrific disease. I am proud to say you did it Jonny boy!  ... My family and I are now requesting your understanding in respecting our privacy as we reunite as a family to support each other in the challenging days ahead as we grieve the loss of our son, brother, grandson and above all a fearless warrior.

According to the Ottawa Citizen, the 17-year-old passed away on Wednesday after battling a antibiotic resistant skin infection for weeks.

Tina Boileau/Facebook

The teen often said that he never had a pain-free moment — even when he slept.

But his mom said she's proud that he never stopped working to spread awareness for the debilitating condition and even raised $200,000 for other families with children suffering from EB.

One of those children is Pippa Atkinson, another “butterfly child” who landed in the spotlight recently.

According to earlier reports, Pippa's mother became aware of the condition recently when her daughter's skin appeared to be dipped in “boiling water.”

Pitre's memory and the work he did to spread awareness about EB will continue to help the other 17,000 “butterfly children” in the world.

His family has asked for privacy during this difficult time.