Jonathan Pitre's doctor reflects on teen's resilience

When he was 16, Jonathan Pitre chose to undergo a potentially life-threatening treatment for his painful and rare skin disease — with the hope his experience would contribute to a cure.

"His quest [was] to improve upon what is given to him and his life," said his doctor, Jakub Tolar, who pioneered the use of stem cells to treat severe cases of epidermolysis bullosa (EB).

"By travelling this path with his physicians, his nurses, his pharmacists, with his family, he [was] building something better for people just like him that will come afterward."

Pitre died at the age of 17 Wednesday evening in Minnesota, where he and his mother Tina Boileau had gone to get treatment for the disease, which causes severe skin blistering.

Courageous and determined

Pitre was one of the oldest patients in the 10-year-old bone marrow transplant program at the University of Minnesota Masonic Children's Hospital.

I have learned a great deal from him about how courageous and determined one can be.- Jakub Tolar, bone-marrow transplant physician 

Tolar said he was also the most determined patient he ever had.

"He knew about the research, and he knew about the clinical trial. And he made his own decision to undergo this procedure," Tolar said.

"He has been one of the most [decisive] patients I've ever had."

The doctor described Pitre as both a friend and someone who taught him about resilience in the face of an "unquestionably tragic disorder." 

"He has been one of the most heroic patients I have ever known," Tolar said. "I have learned a great deal from him about how courageous and determined one can be."

'An incredible resolve' 

Until the very end, Pitre lived a life of advocacy. He shared his painful journey globally and raised money for a charity called DEBRA Canada, which supports those suffering from his condition. 

Tolar said that toward his final days, Pitre's skin had been doing much better.

The treatment was working, he said, but it didn't progress far enough to help Pitre overcome a life-threatening infection. 

"He summoned everything that was within him, everything that was without him — his dog, his mother, his supporters in Canada and elsewhere — and he channeled, he funnelled [it into] an incredible resolve that he applied to every day of his life."