Canadian boy with rare 'thin skin' condition dies tragically at the age of 17

Canadian boy with rare 'thin skin' condition dies tragically at the age of 17

When Jonathan Pitre was born, he was soon transferred to a children's hospital after he developed blisters on his fingers. On the way there, he stopped breathing as his throat had swelled, and was only saved by an emergency intubation.

He made it out alive, but with a diagnosis: recessive dystrophic episdermolysis bullosa, a severe form of EB that causes the skin to blister and tear. Those with it are known as "butterfly children" due to their fragility.

For the following 17 years, Jonathan had to live with excruciating pain due to his delicate and sensitive skin, but still managed to find fun in life up until his death last week. Thanks to help from his mother, Tina, he was able to try out cycling, go-karting, and even ice-skating.

Tina said he was often "living in his imagination" and was a "devoted fan of science fiction". According to his mother, he was writing his own science-fiction book when he passed away on April 4. "I can't imagine my life without him," Tina said. "He's no longer suffering and that’s what he wanted. That’s what I wanted."

He died in hospital in Minnesota, after being admitted for a fever on the Friday before. After his stem cell transplant last year, which sought to alleviate his pain, he was in and out of hospital with infections, fevers and nausea - so it seemed like routine at this point.

"He was all happy-go-lucky and looking forward to getting out," his mother told The Ottawa Citizen. "We figured it was just his infection working. We had been down this path before."

On Saturday, his blood pressure dropped, but he was "still eating and in good spirits". By Sunday his blood pressure had dropped even further, and on Monday his breathing began to fail and sepsis set in, leading to his death a few days later.

Jonathan is one of 17,000 people with this condition, something he came to realize when he attended an EB conference in Toronto back in 2012. It was the first time he had met others with the disease, and told the Ottawa Citizen it was a "turning point" for him:

"I think that was a turning point in my life. Before that, I didn’t really have meaning in my life. I didn’t know what I was here for … I came to understand that my role in life was to help people with EB."

He decided to share his story and help raise awareness of the disease and money for EB charities. After he decided to share his experience online, a plethora of publications spread his words and helped raise more money for those that suffer from the disease. EB charity DEBRA Canada received more than $200,000 in donations afterward.

Jonathan was given a horrible disease to deal with from an early age, but managed to do something to change the world before he was prematurely taken from it. Our thoughts go out to his family.