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 ofepidermolysis 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."

Pitredied at the age of 17 Wednesday evening inMinnesota, where he and his motherTinaBoileauhad gone toget treatment for the disease, which causes severe skin blistering.

Courageous and determined

Pitrewas one of the oldestpatients inthe 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.- JakubTolar,bone-marrow transplant physician

Tolarsaid 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,"Tolarsaid.

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

The doctordescribed Pitreas both a friend andsomeone who taught him aboutresilience in the face of an "unquestionablytragic 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,Pitrelived a life of advocacy. Heshared his painful journey globally and raised money for a charitycalled DEBRA Canada, which supports those suffering from his condition.

Tolar said that towardhis 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 Pitreovercome 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."