JONATHAN PITRE
2000-2018
2000
June 2: Jonathan Pitre is born and quickly develops life-threatening blisters in his throat.
July 2000: He’s diagnosed with recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic disease. Those with the disease are missing a key structural protein that connects the two upper layers of skin; without that structural “glue,” the layers do not move together, but blister and tear.
2012
September: Jonathan attends an EB conference in Toronto that changes his life: He meets other “butterfly children” for the first time and resolves to help them by raising awareness.
October: Jonathan sits down for his first interview with the Ottawa Citizen and describes the challenges he faces.
2014
Nov. 1: Jonathan is the subject of another Citizen feature, this time with revealing pictures of his wounds; the story goes viral and helps to raise more than $200,000 for the EB charity, DEBRA Canada.
Nov. 20: Jonathan is named an honourary pro hockey scout by the Ottawa Senators.
2015
April 1: Jonathan addresses a WE Day crowd in Ottawa.
June 24: Wearing a new suit bought for him by Sidney Crosby, Jonathan attends the NHL awards in Las Vegas.
November: He calls for a national rare disease strategy to assist the three million Canadians who suffer from one.
2016
June: Jonathan announces that he will pursue an experimental stem cell transplant in Minnesota in an effort to halt the advance of his EB.
Aug. 17: Jonathan leaves Ottawa with his mother, Tina Boileau, to drive to Minneapolis.
Sept. 8: Jonathan receives his first stem cell transplant with bone marrow drawn from his mother’s hip.
Oct. 10: Jonathan learns that his stem cell transplant has failed.
Dec. 25: For Christmas, Boileau gives her son the only present he wants: a trip home to see his family and his dog, Gibson.
2017
Feb. 17: Jonathan returns to hospital in Minneapolis after one month back home in Russell.
April 13: He undergoes a second stem cell transplant.
May 16: “Mom, we did it.” With those words, Jonathan expresses relief at learning that his second transplant has taken root in his bone marrow.
June 9: Jonathan is discharged from hospital.
June 11: He returns to hospital with a fever and infection, beginning a cycle of readmissions.
Sept. 12: Jonathan’s condition deteriorates and doctors contemplate gallbladder surgery to relieve his nausea and exhaustion.
Oct. 9: Jonathan rallies and is allowed to leave hospital.
Dec. 23: With Jonathan seemingly stable, discussions begin about the possibility of returning home full-time.
2018
Feb. 14: Jonathan undergoes gallbladder surgery to relieve persistent nausea.
Feb. 26: It’s revealed that Jonathan has been diagnosed with graft-versus-host disease, a serious complication that frequently arises in the aftermath of a donor stem cell transplant.
March 30: Jonathan is readmitted to hospital with a fever caused by a persistent skin infection.
April 4: Jonathan dies at 8:28 p.m. from the complications of septic shock.